Fiona McPhillips is a freelance journalist and academic researcher. Having given birth to her son in 2003, she then faced three rounds of Clomid, three IUIs, two IVFs and suffered six miscarriages before giving birth to her daughter in 2008. She went on to have another son in 2009.
High FSH
I get a lot of traffic to this site from people searching for information on high FSH. Here is my take on it.
Follicle Stimulating Hormone is secreted by the pituitary gland and stimulates the ovaries to mature follicles in preparation for ovulation. An elevated level (>10mIU/ml) on day 3 of the menstrual cycle indicates that the brain is having to work harder to stimulate the ovaries; this is thought to be related to a diminished ovarian reserve. It also means that the patient is unlikely to respond well to ovarian stimulation medication used in IUI and IVF. Doctors tend to agree that you are only as good as your worst FSH result and that a lower result one month does not cancel out a poor result another month. However, there is no consensus on whether or not a low quantity of eggs also indicates a low quality of eggs. Many reports suggest that a younger woman with high FSH has a much better chance of success than an older one with the same FSH level because her eggs are younger and therefore likely to be of better quality.
Conventional thinking suggests that patients with high FSH have a very reduced chance of pregnancy, either with or without assistance. However, we do not know the FSH levels of those with no fertility problems so it is not possible to say that those who conceive easily always have low FSH levels. It is possible that an elevated FSH level in itself does not predict pregnancy outcome but that coupled with poor egg quality and/or other fertility problems, it may seriously reduce the chance of pregnancy.
Traditional Chinese Medicine believes that FSH and related egg quality can vary extensively from month to month and that this can be improved with the help of acupuncture and Chinese herbs. Practitioners believe that stress can play a big part in raising FSH levels and that this does not necessarily indicate lower egg quantity or quality.
A real life friend recently started trying for a baby. She conceived after a few months but sadly miscarried. She had had day 3 and 7dpo bloodwork done early on, mainly to make sure she was ovulating. Her GP had told her that all the results were normal and she hadn’t questioned it any further. After her miscarriage she asked me advice on a few things and I asked about her FSH level, just to rule that out as a problem. She looked up the number and called me back straight away. It was 13.4, she was 33 years old. I recommended, as casually as I could, that she make an appointment with a fertility clinic, just in case. She did but never got to keep it as she conceived shortly afterwards and everything has gone well since. So, with an FSH level of 13.4, she conceived fairly easily twice. If I hadn’t mentioned it, she would never have known about the high level.
My first FSH test, at age 35, showed my level to be 4.6. I was happy with that and didn’t think to research it any further. We carried on with tests and treatment (we were dealing with male factor infertility) for a year and a half before falling at the first hurdle of IVF. When I went for my first follicle scan after a week of ovarian stimulation, there were only three follices. Not the 15 or so I’d been expecting. I couldn’t believe it. My FSH levels were normal so how could this have happened? The nurse checked my blood test results. Yes, my FSH level was low but my E2 (oestradiol, a form of oestrogen) was over 400 pmol/l. Normal levels are below 275. A very high E2 level can suppress a high FSH level and give a low reading. My FSH should have been retested, the nurse guessed it would have been at least 10. A further week on ovarian stimulation medication yielded no further follicles but we went ahead with egg collection. We got two eggs, miraculously both fertilised and were transferred, pregnancy resulted, miscarriage followed.
The following month, my FSH level was 17. A subsequent IVF cycle was abandoned after only one measly follicle was produced after two weeks of stimulation on the highest dose of meds possible. We triggered, tried on our own anyway. Two weeks later, two lines. Another miscarriage. Another natural cycle, another pregnancy, another miscarriage. What was going on? I wasn’t supposed to be conceiving at all with my FSH level of 17. (As for the MFI, my husband had had a varicocele ligation in the meantime and his semen analyses results were back to normal). It was retested, still 17. At this stage we reckoned IVF was a waste of time and money and invested our efforts in trying to stop the miscarriages rather than trying to conceive in the first place. I was already on Cyclogest, aspirin, Heparin, HCG shots and Prednisolone each cycle and had started Low Dose Naltrexone. I was also doing acupuncture 2 or 3 times a week, depending on the stage of my cycle.
I took a month off and took a huge dose of antibiotics, designed to combat any low grade infection in my uterus that may be hampering my pregnancies. Next cycle I took 50mg of Clomid days 3-7 and all the above meds from ovulation. It worked. At the age of 37 and with an FSH level of 17, I supposedly had a statistical probability of about 2% of conceiving and even less of carrying to term.
There was something preventing me carrying to term but I don’t think it was high FSH. I had six miscarriages in a row – what are the odds that I recruited six bad eggs in a row, that were eager and willing to be fertilised but unhappy to stay the distance?
This time around I was too chicken to test. I was just too terrified that the result would be in the twenties and that would be the end of it. We were going to try anyway so I didn’t see the point in knowing, at least not at the start. And here I am, seven weeks pregnant with a healthy heartbeat, conceived with the help of nothing but acupuncture and a HCG trigger shot on my third postpartum ovulation. I am 39.
I completely understand if my few remaining readers are reaching for the Unsubscribe button. I have done that. I’m not even sure if this post is the start or the end of something.
May 6th, 2009 at 2:16 pm
Well why not join the bandwagon
CONGRATS 
Hoping it all works out, good luck sweetie. xxx
May 6th, 2009 at 3:47 pm
I had to read this several times. I wasn’t sure if I was reading what I thought I was reading, or an older post or something.
I had to wait until I saw another comment first.
Congratulations, and the very, very best of luck, I hope it goes perfectly for you guys.
May 6th, 2009 at 4:52 pm
Thanks very much! Didn’t feel up to making a full announcement, thought I would just slip it in there at the end for anyone who was still reading.
Xbox – means a lot, hope we get to do it together.
Artblog – who’d have thought it, bizarre!!!
May 6th, 2009 at 6:00 pm
Wow, congrats Fiona! Like Xbox, I wasn’t sure if I was reading what I thought I was reading, heh.
That’s wonderful news. I’m so happy things have gotten easier for you in the past two years. It was about time.
May 6th, 2009 at 6:26 pm
Much appreciated Claudia. How are you getting on?
May 6th, 2009 at 8:56 pm
Mom Blogs – Blogs for Moms…
…
May 6th, 2009 at 10:19 pm
Fiona, that’s fantastic news – keeping everything crossed for you!
May 7th, 2009 at 1:12 pm
Wow, congratulations! My chin dropped when I got to the last part of your post. That is wonderful news. All the best for a healthy and happy pregnancy.
May 8th, 2009 at 12:43 pm
hey fiona!
Bloody good going girl! Oh now, why would we reach for the unsubscribe button? We know the pain of infertility, but so do you, girl, only too well. I’m so pleased for you; and i’m sending white light (yeah, yeah, hippy dippy but it works!) to you and the little ‘un (if it’s another girl, Jeanette’s a lovely name you know!).
I’m off back to work next week after my latest and final round of ivf due to the ol hyper stimulation. Dreading it really but to be honest, i’m dreading the comments of “not to worry” etc more. I dont worry but I do hurt.
Congrats again seriously it’s great news.
Jeanette.
May 8th, 2009 at 7:12 pm
Thanks girls. The good wishes really do mean a lot, especially coming from those who are still going through it. You are nicer, kinder infertiles than I ever was!
Jeannette – so did you do another fresh cycle or an FET? Are you on a 2ww? If so, the very, very, very best of luck, will be willing success your way. If you mean that the whole cycle has come to an end then I am gutted for you.
May 9th, 2009 at 6:22 pm
Mmmm, not much has changed for me except that I’ve gotten a little older.
I’ll be 26 on my next birthday, still no baby. It has been over a year since my m/c and I haven’t achieved pregnancy since. We went to a fertility clinic a few weeks ago. Male infertility has been ruled out, so I guess there’s my silver lining.
They don’t know what’s going on with me, though. I have to go through a hysterosalpingography soon and I’m terrified that they’ll find something awful. I keep having sharp pains on my left side; there’s probably something wrong with my tube.
But it’s alright, I’m holding on and hoping for the best.
Even though infertility is deeply disheartening, I don’t want to let gloom take over me, and I am not ready to give up.
May 10th, 2009 at 1:26 pm
Hi Fiona
no, unfortunatly we cant ever do ivf again. After 13yrs of marriage, 4 yrs of fertility treatments including 4 ivf’s the last one nearly killed me (oh yes, jeanette, let’s be dramatic!). It’s more painful than I ever imagined, all this. It’s a year today that the docs told me our beautiful baby had died at 8wks and 4 days. 7 months since my lovely mum died and 3 months since the overstimulation meant me having emergency and life saving surgery and a ban on any further ivf. As my hubby has a genetic condition we cant ever have our own children now. And yes, yes, yes, we will absolutely embrace adoption, but it’s so bloody hard hearing people say things like “ah well there’s always adoption”. They hand out solutions like my poor husband has needed to hand out tissues to me! And solutions are great, but they dont take account of my need to grieve these losses.
We’ve spent so long trying so hard, going through the failures of 3 ivf’s and 3 iui’s, of having a successful and wonderful positive on one ivf and then the devastation of losing the baby. I’m so grateful that Glasnevin Cemetary has a plaque from the miscarriage association because at least there’s somewhere i can go and leave flowers. And knowing that mum’s up there with our little one is the only comfort. It’s so bloody raw you know, even though some time has passed. I carry a sadness around with me that I never did before. I feel like we’ve lost so very much.
Jeanette.
May 10th, 2009 at 5:57 pm
Fiona, my jaw dropped – that is fabulous news, gosh, is Anna a year yet? Had you finished breast-feeding. I’m still awaiting my number 3 but having read some of these other comments especially from Jeanette and my heart goes out to her, I am so so lucky to have the two I’ve got.
I need to read your post again – was it purely ‘natural’ this time? Best of luck with the rest of the pregnancy – you really deserve it and I look forward to reading posts about the pregnancy. LOL Lorna
May 10th, 2009 at 6:02 pm
Just reread it (I’m 39 too with 2 months to go till the big 40). Am having acupuncture at the mo too – afraid I don’t understand what the HCG shot on third postpartum ovulation is – I’m also on clomid and pregyl and to use cytagest if I do get preg. As I’ve had 3 miscarriages, I’ve just had the blood test to see if I have any of the blood clotting things and see if I need hepravin etc. Never heard of the FSh blood test levels – I have to admit that I feel there’s a limit to the tests I want – as it just seems to add to the list of things to worry about – but am I being too ostrich-like, head in the sand etc
congrats again, am so delighted for you x
May 11th, 2009 at 10:04 am
Wow – don’t know why I was even checking in here, but so very glad I did. Congratulations, delighted for all of you!
May 11th, 2009 at 11:18 am
Jeanette – I remember your story, absolutely heartbreaking. I thought that maybe you meant you had one last go but I see now that that couldn’t have been the case. You have lost so much and to have any further hope taken away must be too much to bear. No matter what happens, you will probably always grieve what you have lost. I hope it gets easier over time.
Lorna – it was mostly natural. I used a HCG (Pregnyl) shot to trigger ovulation once I got a +OPK. I wasn’t being monitored by my clinic, just had the Pregnyl in the fridge and thought it would help – my 2 previous luteal phases had been 7 days so I wanted to try and lengthen this to give any possible implantation a chance. By third postpartum ovulation I meant my third ovulation since giving birth. I am still breastfeeding and ovulation only started again in February. I wouldn’t worry too much about FSH – as I said in my post, I don’t think it’s always as big a deal as it’s made out to be. And if you are conceiving, then it is probably not too high. Have you been prescribed aspirin for your next pregnancy? I am on it now – it’s a blood thinnner and it’s cheap, easy and usually effective, even for those who haven’t been shown to have autoimmune disorders in blood tests. Very best of luck!
denzo – thanks!
May 13th, 2009 at 9:56 am
WOW, WOW, Feebee I’m delighted for you!! I too had to read and re-read your post, I thought it was a copy+paste from an old one when you were pregnant with Anna, but thats so exciting!! Well done you, I’m absolutely thrilled. xx
May 13th, 2009 at 10:09 am
Claudia – sorry, I missed your post before. Could you have a cyst on your left ovary? Has the pain been there for a while? Have you had an ultrasound since you’ve had it? Good luck with the HSG – mine was absolutely fine, not painful at all – I took a couple of strong painkillers about half an hour before and the only pain was in my stomach from dealing with the painkillers. I’m glad you are getting checked out and maybe they will find something very small that can be easily fixed?
Thanks Treelo! How are you getting on?
May 13th, 2009 at 6:19 pm
Thanks for that reply Fiona, yep, am on pregyl too. Can’t take aspirin as have asthma though am going to ask doc about it again next week.
Well done on getting preg so quick – third ovualtion – wow, you might end up with a brood of 6 yet. To be honest, the fact that you are preg again and will have 3 children (please god all goes well for you) is just so inpsiring as you have gone thru so much – it has certainly given me confidence to keep going. ithink in one way it is fear of another miscarriage that is in some way stopping me getting preg again so just attending hypnotherapy sessions at the mo too.
Hope in one way you’re not feeling too sick and in another, hope you are puking guts up as isn’t morning sickness the sign of a healthy baby?
May 14th, 2009 at 5:17 am
Congrats again Fiona!!
Hope the sickness eases a bit for you. x
May 19th, 2009 at 2:27 pm
Thanks E!
June 8th, 2009 at 11:02 am
а ты любится постите видосы вблоге?
June 15th, 2009 at 10:53 am
Hi Fiona,
I have seen your page & blog before, & have bought your book. I am sorry for all the loses you have had, I do understand. Congratulations on your 2 babies & another on the way…you are now very lucky, Thank God..
To be honest, when I bought your book, I was being treated by Napro for my recurrent miscarriage (having had 4 recurrent m/c at that stage) & I was taking meds for low progesterone levels. when I skipped to the part in your book dealing with this, I felt quite upset at your view of this, Im not quoting from the book now just trying to remember the jist of your view on this …..
sometimes low progesterone levels are linked to recurrent miscarriages but treatment for this problem isnt a proven cure for recurrent miscarriages.. doctors can treat patients for low progesterone even if the treatment will have no effect on the patient, sometimes if the patient feels shes being treated for something , that feeling alone mite help?
Forgive me if I misunderstood your view at the time, or maybe I have remembered incorrectly, but that was generally the jist of what I got from your view on treatment of low progesterone & I felt it was quite insensitive. maybe I was very protective of the treatment I was taking, given that it took me so long to find Napro after 4 losses….their treatment came very highly recommened to me by a epc nurse in my local hospital & I was trusting them with my treatment…& after reading your book my trust in the treatment was questioned..
please dont take my feeling as an attack on you, Its not. Im sure you understand how highly emotional we get during each stage of our various treatments. & I was very much feeling that way at the time..& to believe in your treatment is sometimes half the battle…
this is the reason I didnt read the remainder of your book, I feel I need to explain this to you before making further comment…
anyway..my history is:
I have had 6 recurrent miscarriages since we started trying in Nov 06. we have no children. I have no fertility problem as I can get pregnant no problem. I just cant hold onto the pregnancy. the furthest I have got is 7.5wks in any pregnancy. I had one ectopic during this time which ruptured my right tube which I lost as a result.
I have tried naturally ( early on) , which I was encouraged to do by my doc & gynae, as they felt we had had very bad luck. I had all the standard tests done following our 3rd m/c but all came back with no proeblems to report. After 4 m/c’s I needed more answers, thats when I heard of Napro..
some people differ on their opinions on Napro..I have my own opinion on it , but at least I tried it…it does work for some & not for others which they do print on all their litrature. When you hear of simple treatments working for others I felt I should try too. I gave them 8 mths, we were treated & I got pregnant, only to loose again..I was taking low dose naltrexone.( I see youve taken this too) was diagnosed with under active thyroid & started taking eltroxin, also took pregnyl injections after ovulation..& lots of supplements etc to help our general fertilty ( dh took them too) my progesterone & oestradiol levels were great as a result, but m/c followed (as this was the only treatment that was offered to us) .I lost my faith in it & moved on.
My dh had sa done & level of morphology came back a little low, but the level was taken during the month when we got pregnant so my gynae felt the bfp ruled out any problem with his sa.
I then went to my gynae & asked for clomid, to help us get pregnant quicker as I had turned 38 & our last preg had taken 8 mths, much longer than the other 3 before. Gynae also felt the clomid might help boost the quality of everything for me, better egg, better ovulatio etc.. ..but wouldnt solve the m/c. I got pregnant after 2nd month on 50mg..but lost after 6 wks..
Im now with Kilkenny Fertility clinic, weve had karyotype tests taken & are awaiting those results. I am booked for a hysteroscopy in early july…
This is where we stand after 6 m/c’s…
with your own history, would you feel we need to do anything else? Im now trying to tick all boxes in terms of ruling out anything that mite be causing this for us & gettin any necessary investigations done that we need….I need to know down the line, that we tried everything, as you prob know its very much up to yourself how much you push for treatments & appointments…you can wait around forever or get tings done quickly..Im more the impatient type, ( being 38 has a lot to do with that!!)
I am open to any suggestions, & would value your opinion. I hope your not offended by my comment on your book, it was just one section that upset me during a time when I was very vunerable…
hoping to hear from you in the near future.
Grainne
June 15th, 2009 at 11:36 am
Hi Grainne
Thanks for the feedback on the book – it is good to hear positive and negative comments and I totally understand how emotive the subject matter can be and how people can react differently depending on their own experiences. My view of progesterone has changed over the course of my experiences. I took it on 5 of my 6 miscarriages and it didn’t make any difference. Then I read Lesley Regan’s book on miscarriage and her related research and she was very much of the view that treating low progesterone in the 2nd half of the menstrual cycle was like “shutting the gate after the horse had bolted”. So that’s where I was when I was writing the book. Having said that, I am still on it now – if there is the slightest chance it could make a difference, I am happy to keep taking it.
I am so sorry to read about your miscarriages and the loss of your tube. I was lucky enough to have a child already when I went through mine so I can’t imagine how hard it must be for you. I also attended Napro for an appointment, which is when I was put on the LDN. I had been warned that their success rates are not really different to those of the general population trying on their own but I would have tried anything at that stage and had heard about the LDN having some success with high FSHers. The biggest problem I have with Napro is the long waiting periods that some patients have to undergo – I have known women in their late 30s and 40s who have given Napro a year with no success. There’s no way I would have had the patience for that and kept attending the Sims clinic while having my hormone levels tested with Napro. I was attending both clinics when I conceived and carried to term.
I have thought long and hard over the last year about what I think worked for us in the end. At first I thought it was the Clomid as it was the first time in two years I had tried that. But I was on plenty of fertility drugs for our IUIs and IVFs and still miscarried those babies. I wondered if it could have been the LDN but I had only been on it for a couple of months so don’t think it would have made that much of a difference, plus I never tested positive for any autoimmune disorders. I had been on all the pregnancy support drugs for most of my pregnancies and they hadn’t helped them so I don’t think it was them. So that leaves me with only one thing that I did differently that cycle – I took a huge amount of antibiotics (given to me by Napro) the previous cycle (when we didn’t TTC) which were designed to combat any low-grade infection I might have had in my uterus. The more I’ve thought about it, the more this seems to be the only thing (if there was anything) that could have made a difference. I did have the products of conception tested after one miscarriage and there didn’t seem to be any infection in my uterus but this was never tested comprehensively. Did Napro ever give you these antibiotics? If not, could you ask them for a prescription?
The only other thing that may have helped was acupuncture. I did this 2-3 times a week for the few months before my successful pregnancy and my acupuncturist claimed she could feel my responses improving all the time. She told me before we ever conceived naturally that I would definitely be able to conceive naturally and kept telling me it was just a matter of balancing my hormones for me to carry to term. Have you done acupuncture?
Have you read Lesley Regan’s book, Miscarriage? There may be some things that I didn’t pick up on that might be relevant to you. One thing that is fairly new is the identification of NK (natural killer) cells that can cause miscarriage. I didn’t test positive for these but was put on the steroid, prednisolone, anyway, just in case. Have you had full autoimmune testing done?
I really hope you get some answers as the constant cycle of pregnancy and loss is just unbearable and like you said, you really need to have faith in the treatment you are getting. And no worries about the book – I need to get all sorts of opinions so I can have a good think about them when I do a rewrite. Let me know how you get on at Kilkenny and please god you will have some good news soon.
June 15th, 2009 at 2:57 pm
Hi Fiona,
thanks so much for your response , & so quick too.
much appreciated, & Im glad you werent offended by my comments re the book, but I did feel the need to explain why I didnt read it all- before I made any comment to you ..I will read it now..I have read bits & pieces when the need arose, but never from cover to cover..
The view on progesterone is so widely different its very hard to get a straight answer from people on it..my levels changed because of the meds, but my levels werent rock bottom to begin with, so its hard to know did I really need it or not, it didnt stop my m/c, & I conceived without it before & after. My gynae doesnt believe in Napro at all…but like you say, when your searching for an answer, youll try anything & when I saw it worked for others, I had to try it..
It def does work for some..whether its just they would have gotten pregnant anyway & it coincided with them taking meds with Napro I dont know, no-one will ever know that, its a hard one for a clear cut answer, & every woman is so different with so many different possible problems….
after my 5th miss in Jan 09 my gynae suggested we stop all meds & try the clomid which I did, unwillingly at first, but I did it. I felt I shud have been taking the progesterone support, but I did take cyclogest on the last 2 pregnancies as soon as I tested pos, but still lost both…
maybe I shud have stayed on the pregnyl., I really dont know..this is something I need to discuss with kilkenny clinic now…..anyhoo..( Im a bit long-winded)
I also was prescribed low dose naltrexone by Napro as I tested positive for auto immune issues I was producing anti-nuclear cells??? (never explained properly) & took the ldn from about June 08-jan 09..I still lost..Im not taking it anymore …another item to discuss with KK clinic..whether I need to continue this or not..
I gave Napro 8 mths..& found it long going. its a very intensive & scrutenising method, which doesnt encourage relaxation, I found it hard but got used to it..even the travelling was a problem. we found a new Napro doc in macroom, so didnt even have to travel to galway, but still the travelling was tiresome..& with a history of falling preg every 4-5ths, we took over 8mths to fall preg when using their meds..I tink the meds slowed my system down..as I got preg 2 mths after stopping all meds after napro…also I found meds & results werent explained properly to me..even on questioning them, explanations were very slow in coming, I felt I shouldnt have even been asking for an explanation…which also led me to get very high level of under active thyroid, under their care. It hadnt been explained to me that I neded my bloods checked regularly for under active thyroid & my levels shot up during one of my m/c’s this was another reason I left…I feel meds need to be explained, ..to anyone.
I never was prescribed anti-biotics from napro, they mentioned them at one point due to pre menstrual spotting…which continued for several months..but I was never prescribed anything. the spotting seemed to ease after many sessions of acupuncture. Maybe I should look into this, I havnt closed the door on napro, so I prob could still get a prescription from them, but I have opened the door in KK clinic, I might mention the spotting & anti-biotic treatment to them & see whats their reaction.
I have done acupuncture & found it extremenly helpful..I had been prone to heavy periods with clotting but after a few weeks of treatment this was reduced to quite a normal flow with prementrual spotting significantly reduced, but still the m/c’s happened.
I havnt read the Miscarriage book , I have heard Prof Regans name mentioned several times over the past 2 yrs, knowing she was based in London, I didnt look into her any further. I will look for this book, Thanks for that..
were having karyotype bloods done at present (currently awaiting results) I believe the tests for K cells are included in these, if not I will be asking about these, I have read of their importance & I have them on a list of things to ask in my follow up visit. KK clininc have already mentioned the prednisolone to me on my 1st visit, so maybe I will be gettin a prescription for this on next visit, if not Ill be asking…
Thanks again for your quick response…
maybe my hyteroscopy in july will tell us something we need to know & can fix..it would make everything so much easier to have an actual problem to fix, instead of ‘unexplained’ !!
anyhoo…
I have the programme from this morning taped to watch when I go home, the girl Sarah that was on with you posts on a website that I currently post so, so I had heard of it last week..Im sure it went well..its great to bring the topic to people attention…looking forward to watching it when I get home from work.
hope to chat again soon..
Grainne.
June 15th, 2009 at 9:07 pm
Grainne – the “unexplained” tag is so frustrating. Even though we had a diagnosis each (high FSH and low motility) for our infertility, we never got one for the miscarriages. In one way it kept me positive that we didn’t have a reason not to try again but it would also have been nice to have had something that we could work at fixing.
Sarah was fantastic on the show – a real natural in front of the camera. She also did a great job of getting across the pain and frustration of TTC without sounding aggressive or bitter (I have had to work at this!).
I hope Kilkenny will look after you and answer all your questions – they seem to have a great reputation in general. Good luck!
July 2nd, 2009 at 2:44 pm
Очень понравился ваш блог! Подписался на rss. Буду регулярно читать.
July 3rd, 2009 at 7:48 am
Hi Grainne and fiona,
I’m on here looking for the link to the infertility forum and just came across your comments. I’ve been on Napro for almost 2 years, it took almost 9 months to sort out what was wrong, then 6 months to get preg, then an early miscarriage back in Jan and not preg again yet, I’m 40 in 3 weeks and was really hoping to be preg by then (I’m lucky enough to have 2 kids but still want more) Got my periods yest, I’m normally a 35 day cycle but went to 36 days so was hopeful and am now devastated. I had a good month last month in terms of being positive etc but it’s really consuming me and I’m not sure I can carry on with going through it each month, having said that, I know that given a few days, I’ll be trying again.
I visited the Kilkenny clinic last Dec (as I live nearer to Kilkenny than Galway) to have my follicles checked at ovulation and all was fine. All seems fine – my progesterone, ovulating, FSH etc. I know I’m not producing as much mucous as perhaps should be and I know that in the past when I have ‘relaxed’ I’ve got preg and each time it did take about 6-8 months but the waiting is tough.
sorry, I’m being longwinded. basically I feel the time has come to try something else as well as the Napro and was wondering what you recommend. I’m only 17 miles from the Kilkenny clinic so would be interested to hear what Grainne thinks of them if she checks the comments here again or Fiona, if you would recommend the Sims?? I’ve recently had the blood tests at St James (following third miscarriage) to check if I need hepravin etc but as my miscarriages were all early, it doesn’t sound as though I will but we’re at the stage for crossing ts and dotting i’s!!
Thanks in advance and hope all is still well with you Fiona
July 6th, 2009 at 3:46 pm
Lorna – I’ve dropped the link to the forum as it was getting way more spam than legitimate posts.
I know the feeling well of wanting another child, despite having one or two already. It does consume you, regardless of how lucky you feel already. If I was you (and I have been!), I would try something other than Napro. I think Napro is all very well if you are prepared to commit long-term but it can often waste valuable time for the over-35s. I don’t know much about Kilkenny but I have heard positive reports about them. I can highly recommend Sims – they will do all the investigations you need and give you every pregnancy support drug that might help. There is no harm in taking aspirin and progesterone or Heparin (up to 15 weeks at a time) and they could well be just what you need. If you feel you are ready for more thorough tests and treatment then it might be a good idea to give it a go. Good luck with whatever you decide.
July 6th, 2009 at 5:23 pm
Thanks Fiona, I actually went to see a different GP today (a female one in a Wellwoman practice) to get her opinion. Initially she felt that the Napro and knowing when I’m ovulating etc should be sufficient, given that it has generally taken me 6-9 months to get pregnant each time before. Having said that (and I know you don’t agree with the notion that relaxation helps conception), every time we did relax about it or thought it wouldn’t happen that month because I had a cold or whatever – it happened. I’ve even gone for hypnosis and Psych K to help me relax. Sorry, I’m going off the point.
Given my age (40 this month), I’ve decided to make an appointment for a consultation at the Kilkenny Clinic and make a more informed decision then re the probable success of intervention/IUI/ whatever. (apparently the average length of time to conceive when you are 40 is a year) I’m going back to Galway on 22nd and will see what they say. GP doesn’t recommend taking aspirin cos I have asthma but am going to ask Galway about it.
In many ways, I feel that I’ve done quite a bit to ensure success, with the laproscopy everything was fine and my follicles rupture fine etc so it’s just a case of it actually happening in many ways but given that I want 2 more (and would love twins at this stage), I want to do everything possible to ensure no regrets or feelings of ‘i should have done that’ – gotta give it my best shot. I would just hate to be one year further down the road and no pregnancy. Last year when we went out for my 39th birthday, I was sure that in a year’s time I’d either be heavily preg or have a tiny baby.
Gosh, I hate that TV ad that says ‘one little sperm can get you pregnant’!!!
Thanks for that Fiona, and all the best, Lorna
July 14th, 2009 at 4:17 pm
hi Lorna,
Sorry I hadnt checked back in here for a little while, been giving myself a break from the internet!!! I can get caught up in it all & get consumed with it all..at times…
anyhoo..Im not really the one the give anyone advise,
but, Im sure youve read my story up above, I can only tell of my experience..Ill try not repeat any info…but after out 6th mc/ this may I booked an appointment in kilkenny clinic…having tried on our own, tried napro for 8 mths, tried clomid with my gynae & zero meds..I wanted to try the clinic …They saw me very quickly..& they are near my home (in relation to other fertility clinics)
prior to this Ive had a lot of tests etc done..& had all these old results forwarded onto kilkenny..ALL RESULTS WERE FINE. Ive also had follicle tracking, & it showed everyitng normal..
all kilkenny asked me to do was get a hysteroscopy & d&c, which showed nothing wrong inside, like yourself…& I also got karyotype bloods done for them, & those results came bac normal . If you are getting these done…the clinic charge something like 270 per per…both u & dh need them done if required, but I got them done through my own gp, costing us the gp visit only €50..saving over €500…hope this tip helps you out too…
I had my follow up visit yesterday…& it seems theres nothing they can do for me..I have to start trying again, but no meds will be used, as we can get preg ourselves. I told d doc because of my age (38 since feb) I used clomid last time & it worked after 2 mths only..( usually on our own it takes us 4-5mths for bfp..) so I got a prescription for 2 mths of clomid..I also asked about K cells..& hes looking into that for me…
doc in clinic said to go back on the aspirin, I was advised to take this as it can do no harm, even thou I dont have the clotting disorder…& if I get preg…then they will precribe predislone..in case I am fighting off the baby within my own system (any immune problems)..& also I wud get cyclogest at that point ( even though Ive taken that before & still lost.
Im not sure if Im helping you or not…you seem to have a similar story to mine…u can get preg, but cant hold onto them…it seems theres really not a lot can be done for our situation..let me know if you have specific questions maybe, oh..it was the male doc I attended in Kilkenny..
Hope this helps you in some way, maybe talk again soon,
Grainne
August 4th, 2009 at 4:18 pm
Hi Fiona…
Just a quick one…re the prednisolone, you took on your last pregnancy…I asked the doc in Kilkenny at my last visit re the killer cells…etc.. he didnt know much but rang me back today…( 3 wks later)
they had told us that could do no more for us basically, theres no medical problem to fix, unless if we get preg again ourselves that he wud put me on prednisolone to councteract any immune issues…
Today he said he wants to put me on a course of these, from day 1 in the cycle, a high dose, decreasing the dose each week…
You mentioned you took this on your last sucessful pregnancy, Had u ever tried that before? or was your sucessful pregnany the 1st time you had taked prednisolone,
Just wondering how sucessful it can be?
hoping it might be a solution for us…
tanks for your time.
Grainne
August 11th, 2009 at 8:31 pm
Grainne – sorry for the late reply. I took the prednisolone on my two IVF pregnancies, both of which ended in miscarriage. I didn’t take it on my last (successful) pregnancy as I was on Low Dose Naltrexone and the steroid in the prednisolone would have counteracted the LDN. I didn’t test positive for NK cells though so it was just another shot in the dark. Did your doc test for NK cells?
Have you thought about going to Sims? I know they do even more tests and treatments for recurrent miscarriage – intralipid infusions and IVIG – than they did when I was there. It is so frustrating to be told that there is nothing else that can be done as there is obviously something causing your miscarriages and you would hope that a doctor would keep trying different approaches. It might be worth trying to get a telephone consultation with a Sims doctor to see if it would be worth your while visiting the clinic.
August 14th, 2009 at 9:32 am
Hi Fiona…
tanks so much for your reply..dont worry bout the delay..ur not supposed to be at my beck & call!!!…Just its great to have someone in a v similar situation to get advice from..
tanks so much for your time.
I have taken the low dose naltrexone before with Napro..
(after spending 8 mths being treated by them for low progesterone amongst other things) I got all my levels perfect with them & still lost..thats why I moved on from them in Jan this year…
at that stage I went back to my own gynae…who took me off all those meds & tried me only on clomid, which helped us get preg after only 2 mths ( I felt I needed to get preg a bit quicker as I turned 38 this feb) ..but obviously we lost again..
Its a bit off putting to know that the prednisolone didnt work for you…now maybe were all different & each of our complaints have different reasons…( so it mite work for us..-Im hoping..) Just it would be great to hear a positive story about it.
I had no test for K-cells…I just asked it in Kilkenny the last day after reading about them, would they have any impact on me.- they didnt seem to know much about them….so they looked it up & got back to me.
with Napro I had tests done which indicated I was producing anti-nuclear anti-bodies…(never really understood what that meant..) – this was why I was prescribed the ldn…& another complaint I found with napro, not many things were explained properly, even on direct questioning…anyway..these results were all in my file in Kilkenny…but I really think hes prescribing this for me based soley on my recurent miscarriages, not even based on any other tests…as it seems it can be a solution for this..
I shud really ring them & ask him a few questions…do I need to have this test done?
I live in Waterford & Kilkenny came highly recommended, but I went to Kilkenny mainly for convenience, as you probably understand with this problem ongoin for nearly 3 years it gets akward constantly taking time off work etc…& now -recession times . Im the only one in my office..I felt Kilkenny was a good clinic & it was very convenient..but I do feel they have done very little for me…
our last lost was in May..& I referred myself there that week…got an appointment..& they asked me to get karyotype bloods done & I had a hysteroscopy done at their request..then they said there was no more could be done…we had no problem..
Sims is in Dublin…and the thoughts of the travelling up for treatments is so daunting…let alone the hassle with work etc…
can I ask what are these intralipid infusions and IVIG ? whay are these test for?? I will google them & see…maybe I will see this month out…Im day 20 today..see what happens, give the prednisolone a full month next month…& then if nothing happens try Sims…
I might just give them a call & ask for a telephone consulatation to suggest things they could do for us??
Just to be ahead of the game…
Thanks so much for your helpful suggestions..
lets just hope & see…maybe we’ll get a miracle in the meantime..!!!
Grainne.
August 18th, 2009 at 2:23 pm
Grainne – I don’t know much about IVIG except that it is a blood product administered intravenously. It is controversial in that there are no long-term studies proving its effectiveness, although Dr Taranissi in London claims to have used it with huge success for recurrent miscarriage. It is very expensive (not sure of exact cost). Intralipid infusion is a similar treatment (again, not sure exactly how it works) but much cheaper.
It does sound like you are being prescribed treatment just on the basis of recurrent miscarriage, without a huge effort to find out the reasons why. I hope Sims can help without too much travelling for you. But a miracle would be even better! Very best of luck!
September 8th, 2009 at 9:12 pm
Feebee – I just read on MM that you are pregnant, delighted for you and your gorgeous family. I’m attending SIMS at the minute. Blood test indicate low ovarian reserve so coming to terms with that. Not sure what the next step is..
But just want to congratulate you x
September 11th, 2009 at 10:38 am
Hi Fiona,
Just reading Loodabelles post above,
Wow Congrats to you…didnt know you were tryin again…
Thats great news..How far are you gone??
any tips you can recommend to those of us still trying..!!
what meds are you on this time?? what worked this time? have you been trying long for this pregnancy…20 questions??! Apologies…hope you understand my interest..
I was hoping to ask you about the prednisolone, you said you took it at one stage. Im on it at the mo, in case I get pregnant, to prevent me loosing ( to kill off any K-cells)
Im on my 4th week of it. First 2 wks I took 30mg, then reduced down to 20 mg…thats when the side effects kicked in…dull headaches, for days on end..lightheadness..& dizziness…V strong heartburn.. got cramps in my lower leg & just generally not feling good, rang the clinic & they told me to go to my doc..& reduce the meds down to 10mg..
Im unhappy about the reduced amount, as i feel it will now take twice as long for the same dose to work…
but I couldnt cope with the side effects..even found it hard to concentrate in work…got a flashing from the computer screen that was very off putting.
anyhoo..my question was…did you have any of these side effects? are they common with the prednisolone..or is it just me & Ive had a bad reaction to them…
Many Congrats again to you & I do hope your keepin well..
Grainne.
October 2nd, 2009 at 11:01 am
Hi Grainne
Just flicking through this site and have read yours and Fiona’s stories. Please don’t give up on the’natural killer cells’ really go and get this checked out as I have a feeling that this could be your major problem and one that is very solvable! The ARGC in London are very hot on this and would check it for you, they are the top
IVF clinic in the UK, it is well worth looking into. By the way, I haven’t read all your responses so if you have had it properly checked out then excuse me
All the very best to you.
October 5th, 2009 at 10:42 am
HI Muna,
tanks for your reply…I have been prescribed the medication to treat the killer cells, even though I have not got the test for it..Because of my history, the 6 no miscarriages, they based the medication on my history..
I mite ask about getting tested for the K cells, but I tink I would still just end up taking the meds im on at the mo..the prednislone..
tanks again so much for your response.
Grainne.
October 5th, 2009 at 10:16 pm
Loodabelle – sorry, I missed your comment before now. And thanks! So sorry to hear your diagnosis, I know what a shock it is. I hope Sims can give you all the support you need and hopefully you will end up with the same result as me. I found Sims very positive about my situation and didn’t write me off at all, even when my FSH came back at 17. I ended up conceiving Anna on Clomid, after 2 IVFs ended in miscarriage. This time around I just used a HCG shot to stimulate ovulation and extend my luteal phase as my previous LPs had been only 7 days. Feel free to ask anything or email me if you prefer.
Grainne – thanks, I know it’s not the easiest thing to hear about other people’s pregnancies. We started trying again as soon as I saw the first signs of my fertility returning. I started monitoring my cycles when Anna was about 2 months and then it took about another 5 months before I ovulated. My first couple of cycles, my luteal phase was only 7 days so I called Sims. The next cycle I used a HCG shot to stimulate ovulation and give me a better quality of ovulation which would hopefully lengthen my luteal phase and give me a chance of pregnancy. By some miracle it actually worked (I was prepared for the long haul) and my obstetrician immediately put me on Cyclogest and aspirin. That’s all I took and I am now 29 weeks.
So sorry to hear the prednisolone is causing you so many problems. I only ever used it after IVF so didn’t have weeks of it before getting pregnant. I don’t remember any side effects but I do remember a friend telling me that it gave her the shakes. Is it Kilkenny that is prescribing it for you?
October 12th, 2009 at 3:01 pm
Hi Fiona,
tanks so much for your reply…Im sure you’ve plenty of other things on your mind these days…I do hope your keepin well..
I have read your post from the main page, & it is most interesting, I was always one for breastfeeding, & not sure how long it would work out with a poss quick return to work for me after any birth…but the thought of it delaying the return of your cycle is a bit off putting….I like you, would be most anxious to start trying for no 2 again v soon, dats if we ever get a result 1st time!!!
as this would only be our 1st, after trying for last 3 years & having lost 6 other preg’s. I would be most anxious to have a no 2…but age is also cathcin up, will be 39 next feb!!
as it is, last month we did timed intercourse, had a scan in Kilkenny day 8, follies were growing…inject pregnyl on day 11…& 36 hrs l8r start trying for 2 days, we seem to have been sucessful this month too, got a bfp yesterday…which is great, but its early days & Im worn out gettin excited at this stage of the game..Ill give another 2 weeks, before Im jumping for joy…
This was my 3rd mopnth of clomid for this time…& Im on aspirin all the time from mid cycle, still taking the predislone…& had a prescription of cyclogest from KK to take 2 each day, morning & evening, I started that this morning…I need to contact my acupuncturist too, he deals with fertility, & says he’ll help me if we get preg…
so Fingers crossed..lets hope this works.
Best of luck to you…When are you due?
October 12th, 2009 at 10:39 pm
Oh Grainne, that is fantastic news. I know the next few weeks are not going to be easy for you but it sounds like you are doing everything you can. Good luck with the acupuncture – I did it at the start of this pregnancy and my last one. I am due on 23rd Dec – how about you? Let me know how things go for you and the very best of luck!
October 13th, 2009 at 9:05 am
Tanks Fiona,
as you know yourself..the first weeks are the killer ( not meanign to put a pun on words) …buts you cant really accept it, & cant be too negative either, you hav to just hope to God it works out…Lots of prayers are being said, Believe me..!!
I rang kilkenny to tell them the news & they put me on innohep injections 3500IU..one every night…
This is to avoid any blood clotting problems, it makes me wonder though, if I hadnt rang them, would I not have been prescribed this?? In my opinion either I need this meds or I dont…
As I havnt had any blood clotting tests done with Kilkenny, I feel this is another solution they are precribing based on my history soley..Just trying pot luck with solutions that work for others in a similar situation…not great for building my confidence in them…& Ive had the normal clotting tests done & all were fine..no prob…
Ill never see the resoning for prescribing things that ‘might’ work…
Isnt that luvly an Xmas baby for you..what an Xmas pressie..
I wish you the best of luck for the rest of your pregnancy…any thoughts on going again??? !!
October 13th, 2009 at 9:11 am
Grainne – I think most pregnancy support meds are based on the idea that they won’t do any harm and they might just work. Most people I know never found a specific reason for their miscarriages and just took whatever meds they could, myself included. How many weeks are you now? Will you have a scan at 6/7 weeks?
As for going again, I think not. If everything works out with this pregnancy, I think it will be time to count my blessings and step off the TTC train forever. It will be hard but I have been luckier than I ever imagined a few years ago and I couldn’t put us all through it again. Plus my husband will leave me if I ever mention TTC again!!!
October 13th, 2009 at 2:40 pm
Ha ha…
had to laugh at the idea of your husband leaving at the mention of ttc again…
I really do wonder what goes through their heads at times ..when were goin through the whole..giving out about the docs..& watchin the right time each month..it really must drive them off their heads…in fairness they do go through a lot too…& sometimes without explanation ..from me anyhoo…
I only tested Sunday, which wud hav been day 26 ( of a very regular cycle) Ill only b 4 weeks 2moro..so V early days…Im goin 2 acupuncture 2nite..& hav told him, so he’ll be treating me accordingly…& hav booked in 2c Doc 2moro, to get her 2 give me a 2nd opinion-(bfp)..never believe til she says it!! need to get my blood done too, to get a start hcg level, in case of chance of ectopic..
Im good friends with the girls in the ealry preg clinic at this stage, they usually scan me at 5 weeks..so maybe end of next week…Fingers crossed we get there..
I am optomistic about it this time,
I was only saying the other day, I dont know how after 6 losses…each time it happens I still get optimistic that it can work…but I am..please God this is it…it really does wear you out…
I know what you mean about people not findign a specific reason for miscarriages..theres very little investigations done anyway to get information from…very little to base solutions on…I do wish I was being treated for a specific cause…as it is we have no reason this is happening..so nothing to treat as such…
You have been very lucky, & blessed, Im sure your thankful at this stage..
Tanks again for your time & for listening ( reading..) I do appreciate it..
best of luck to you from here on in…
Grainne
October 29th, 2009 at 10:04 am
Hi Fiona,
Just an update, unfortunately we lost again last week…7th time..& whats more frustrating is weve learnt nothing from this time..except that the meds obviously didnt work…
so were back to square one again..
goin for a follow up consult to my gynae & Kilkenny Clinic next week…at this stage I need them to pull out all stops for us….but not really sure do they even know how to approach this, as no-one seems to have an answer…
At times I wonder, am I not meant to have kids, & in another age, would I just have been told, “you cant bear children?” are we just hoping against hope that we’ll get magically lucky one of these times…?
I really do feel thats all were hopin for at this stage after everything..-which isnt very encourageing.. as I have no faith in the meds were being prescribed, as they seem to be the solution for the general recurrent miscarriage populatio & not a solution specifically for us…
sorry for the rambling….If you think of any tips, or any relevant questions that I might ask at my consults next week…please feel free to suggest anything…
Im open to any help…
Hope your keeping well..
talk soon,
Grainne.x
October 29th, 2009 at 8:31 pm
Grainne, I’m so sorry. Was just thinking about you and wondering if I should ask for an update.
Please don’t think that you’re not meant to have children – it’s a medical problem, not a moral or philosophical one. At this stage you really do need to put pressure on your clinic and if you feel in any way that they are not pulling out all the stops or they just don’t know what to do, then get another opinion. It is obvious they need to dig deeper than their usual tests and treatments as the usual meds have not worked for you. If you are not happy with what they say at your review, then give Sims a call and see if they have any ideas. There is also the option of going to see Lesley Regan at the miscarriage clinic at St Mary’s in London. You can see her privately or publicly on the NHS if you get a referral from your GP or clinic. Might be worth putting your name down for a public appointment so at least you have something in the pipeline if all else fails.
As for what to ask at your review, the only thing I did that you may not have done is I took a load of antibiotics in case I had a low-grade infection in my uterus that wasn’t showing up on tests.
You are having so many early losses that there has to be something specific causing them. It can’t be just bad luck or bad eggs – you are conceiving but something is stopping your embryos getting any further. I do think you will go on to have a baby once the problem is sorted but it is so hard getting to that stage and getting the right help. Hope all goes well at your appointment next week.
October 30th, 2009 at 10:11 am
Fiona,
tanks so much for your reply…I really do appreciate it..
I tink you understand the blank walls of info you come up against when your going through all this, & to talk to someone whos been through it always means so much more..
Thanks a million for even replying..
I really dont feel it is bad luck whats happening to us, there must be a reason.., but I do feel our answer will come by luck, as it seems thats the way were being treated..a pot luck of solutions that work for others…
I do remember you mentioning the low grade infection before, did you say you got meds from Napro to treat that??
can I ask, if the infection wasnt showing up on tests, how did you know you had it? I have been through the whole Napro thing, & would have a doc to contact if needed, but possibly Kilkenny might prescribe me with something to try for that…I will ask.
Sims had also crossed my mind…as it seems they have a dedicated recurrent clinic..which seems to be the obvious place I should be going, its just, I think I will give Kilkenny one last shot, Ive spoken to the main doctor there last saturday, & she says theres a few things they can still try for us, Im not panicking about the time left or my age just yet, I know Im 38, goin on 39 next feb…but really, Im ok with giving them another shot, as I have lots of tests already done, so I shouldnt need much more tests….& with the timed intercourse, I tink we will get pregnant again quite quickly.( as we have before) ..so we might get the next result within a few months, & then if another miss happens…then def Im moving onto Sims…
The whole London thing is such a big step…I feel a lot of hassle & stress even getting time off going to Kilkenny…I dont even want to think how stressed Id be if I was goin to start going over & back to London, let alone mention the costs of it all…as you well know!!..anyhoo..
have you any experience of Sims? I tink you mentioned you went there (hope I havnt got my info wrong) …did they treat you for recurrent miscarriage? was there any additional tests they did, that other clinics dont do, that maybe I could suggest to Kilkenny? Just to be ahead of the game as such??? sorry for the 20 questions, Im always very motivated after a loss, always wanting to move onto the next step, to get closer to our answer…& as you also will know, its up to me to push for this answer…
hope you dont mind my questions…
You never said how your keepiing, I do hope your pregnancy is goin well..Im not one of those recurrent miss people who cant speak to others who are pregnant…I am very happy for you that you have been so successful , after all youve been through yourself…take care…& hope to talk again soon.
youve been great help so far…Tanks a mill again..
Grainne.
November 2nd, 2009 at 10:59 pm
I don’t know if I ever had an infection, nothing ever showed up on tests – Napro gave me some strong antibiotics just in case – said that in 5% of cases of recurrent miscarriage there is an infection.
I know London is a big step in terms of cost and hassle, although I think you can be seen for free on the NHS. My thinking was that if anyone could find a solution, they could. It was an end of the line scenario for me – thankfully I got to cancel my appointment as I was 4 months pregnant by the time it came around.
I did go to Sims – had only had 2 miscarriages when I started with them but they did all the autoimmune blood tests – nothing ever showed up. I did a few IUIs and 2 IVFs with them so they were able to monitor my follicle growth and have a look at my egg quality. Despite being an extremely poor responder to the IUI/IVF drugs, my egg quality seemed good which was a relief. It was also why they persevered with me even though I had such high FSH and so many miscarriages. In terms of what to ask, I suppose you can make sure they have done all the autoimmune bloods, checked for NK cells, any other clotting issues, genetic testing.
I am doing fine thanks and thank you so much for your kind words. You are very strong and positive to be able to be happy for others – I wish I could have been as generous as you!
November 5th, 2009 at 3:54 pm
Hi Fiona,
I went to Kilkenny for my follow up visit on Tuesday…met with main woman there..for the 1st time..was quite impressed with her…she seemedto believe we actually have a problem..which most others dont, weve been getting told, “its bad luck”, or “keep tryin” mostly up to now…
7 misses isnt bad luck…somethings not right & she agrees with me…
shes taken blood from me to teat for further immune tests…& then I have everything covered..
& shes now focussing on my hubby…
hes gettin sa test done again…as his morphology was a bit low 1st time he got it done jan 08…but as we got pregnant same month my gynae told me to disregard the result, as we were still gettin pregnant & low morphology wouldnt be a problem..Dr. Martine completely disagrees with this belief…
theres new tests in dna fragmentation of the sperm…
which if its mild can be treated & if its a srtrong case, theres a diff treatment for this..
Kilkenny has another patient similar to me, with 6 misses, & all tests coming back fine…no probs anywhere…
her hubby tested positive for this sperm dna fragmentation…
& it seems this could be the solution for us…
so Im really hoping this will be a problem we can solve…
of course the testing cant be done in Ireland..only in Belgium, and it costs €400….with a further €150 for sa test..
which is eating me up at the mo…but if it gets the answer were looking for, it will so be worth it…
so Fingers crossed…
dh will be gettin tested on Sunday, & results 14 days after that…
talk again soon,
Grainne.
November 12th, 2009 at 1:10 pm
Grainne – that is great that they are taking you seriously now. I really hope they find something that can be fixed. I always remember having tests done and being in two minds about what I wanted from the results – mostly, I wanted everything to be ok but I also wanted them to find something that could be fixed. I think in your case, there is definitely something to be found so I really, really hope this is it. Good luck!
December 8th, 2009 at 10:48 am
Hiya Fiona,
You must be near your due date at the mo..how long more do you have left? Hope your keepin ok…
Dh got the sa repeated & morphology was low again..Im a bit annoyed with my own gynae to let this pass in jan 08, we could have been so much further down the line now if he had followed up on this for us at that time….Anyhoo..( let the anger pass!!)
on the basis of the low morphology we got the dna fragmentation done for dh…& yes it was low..so this it seems is our problem…that has taken us 3 years & 7 miscarriages to find…
Because of the low result it seems that ivf is our only option..& thats ivf with icsi..& also it seems because of my age (turning 39 in feb) blastocyst is highly recommended for a better chance of it all working out ok..
from rough calculations it seems what we need will be costing us around €8000…which I hadnt bargained on..
(thats some of our house savings gone.) I know if it all works out it will be worth it in the end….but if it doesnt…and theres no guarantee with ivf as you well know..I cant see us being able to afford to repeat this all again…
I really feel this is a money game..even from trying to get answers from the nurses…who arent great at returning phone calls unless its to tell you how much someting costs..
theyre insisting on us both gettin the repeat baseline screening done in the clinic..at a cost of €180 p.p. ( 360 for the 2 of us)..Im insisting on getting the 1st lot of these bloods done in my docs as a cost of approx €35 p.p. ( a bit of a difference.) saving us nearly €300..
The cost is really gettin to me…its eating me up..but Im gonna have to leave this feelin go..& look towards this treatment & tink positively..for what its worth…
but I do feel this dna fragmentation need to be more advertised..its something which could have saved us almost 2 years of waiting & 4 miscarriages..It could help others too in our situation..& God knows theres plenty of others at a loss to know whats causing their problems..
Talk again soon,
& best of luck to you.
Grainne
December 8th, 2009 at 6:18 pm
Grainne – I’m glad you got some answers at last but I know IVF is still such a daunting prospect. I hope the fact that you do conceive fairly easily will mean that once you make an embryo with good sperm, it will develop and implant well. The cost is so frustrating though – I remember the dread of visiting the clinic, knowing there would be some unexpected cost every time I asked a question. Do get as many of the blood tests as you can done in advance with your GP. You’re right about the fragmentation – I’ve only heard about it in the last year or two and it seems to be something that is tested when all else fails, rather than something that is brought up at the stage of the first SA. Have you got as far as thinking about dates yet?
December 10th, 2009 at 9:45 am
Hi Fiona,
tanks for your reply…
I know what you mean about extra costs every time you ask a question…I tink our clinic (Kilkenny) are on the verge of asking us to leave as “I ring up & ask so many questions”!!!-or so they say…
well not so many questions..as asking the same ones over again, but not gettin a straight reply…Its so frustrating..
I had a day of it on wednesday..trying to arrange to get our bloods done in my docs, to save us sum money..God the hassle…Ive been trying to arange this since last week… I really dont understand their logic,
theyre gonna get a good few thousand euros from us anyway…it seemed they put up every obstacle in my way of arranged the bloods with my own doc..by delaying giving us info & not returning mine or my docs calls, not giving my dh the correct collection botle for the tests & then they suggested that no-one else had ever asked to do this??
then after leaving a message for one of the nurses the thurs in the week before, just asking a few general questions about ivf (as nothing had really been explained to me) up to weds this week I still had not got my call returned ,so was still asking about the same info…eventually they suggested that I had so many questions I prob needed to come for a consultation..
( sure I did at €130 a pop & more time off work.I dont tink so.) the nurse has now agreed to see us for a free review nest week..to explain some of whats ahead of us..
My dh had a tese last week, to extract the semen from source..they left him home without this prescription for anti-biotic. now he was still a bit dopey from his sedation & did forget to ask, but they were working & forgot to give it to him..I took almost 45mins later that day trying to get the prescription from them..
then yesterday dh had to come home from work as he felt he was gettin too sore to work.( not very nice place to be sore..if you know what I mean).
he rang the clinic & asked to speak to one of the nurses & epxlained it was urgent..they sid nurse would ring him back..but he said he’d hold instead, it was urgent…eventually the nurse told him to take paracetamol & rest..
he went to his own doc at home..& she felt it was gettin infected & prescribed a course of anti-biotics, which he took since yesterday evening..& hes now back in work 2day..
Im loosing my patience with the way the clinic deals with us…
& I know its not the right time for me to be feeling like this, I should have every confidence in them before heading into ivf..but theyre doing my head in..
were scheduled in for ivf for feb..my next cycle should start end of next week,I have the pill at home ready to take..could be on that for 4-5 weeks nurse said..
thats all I know..hope to know a bit more next week after review…
How are you doin at the mo?? Whens your due date??
sorry for all the venting, but its all just gettin to me at the mo…
The thought of this not even working..is put to the back of my head..as I dont tink we will ahve another €8,000 to spare…
Taks again for your reply..
Talk soon,
Gra
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March 12th, 2010 at 4:39 pm
Hi Fiona,
Me again..just an update…
last post we were schedule for ivf for feb, but in Dec my Dda had a fall in the ice & had a bleed on his brain..He hasnt been well since & has had 2 brain surgeries since that time..
in Feb we were told we only had hours left with him after a 2nd massive bleed on the brain (following a full recovery from the 1st bleed) , but he pulled through Thank God..
He has some damage & is in rehab still, & will be for several months, we’ll never have him back as his former self, but we still have him.xx…
This put my feb ivf on hold, so we went for it in March..
I was on full meds..& after first 2 scans doc increased my injections to the max…but sadly we had to cancel the ivf this Tuesday due to low reaction …not enough follies to work with..
Doc is hoping its to do with the stress of Dad (which has been the worst time ever) Im hoping so too & its not my age kicking in –now that were finally gettin to the root of the problem, Im goin to be too feckin old to make it work…
anyhoo…
Im off all meds on & waiting on af to arrive. Im gettin a few more bloods done this month coming & a mid month scan to see how the follies & ovaries are looking ( doc says my ovaries looked very smal & flat..!!)
after this month out…all goin well we will try a natural cycle with no down regulation the following month & hope for the best…
Just to keep you in the picture…
Hows Harry?? He must be gettin big now..
Hope your keepin well, talk again soon,
Grainne.
March 22nd, 2010 at 2:41 pm
Grainne – I’m so sorry to hear about your dad – what a horrible, stressful time you’ve been through. And then a cancelled IVF too – I’m so sad to hear that. My 2nd IVF was cancelled due to a very poor response to the drugs – only one small follicle. How many follicles did you have? I had only three on my first IVF and they went ahead anyway – 2 embryos, a positive pregnancy test but then another early miscarriage. Have you had your FSH tested recently? Chinese medicine does think that stress causes a rise in FSH and a subsequent poor response to stimulation.
Are you still with Kilkenny? I hope you manage to get some rest and relaxation for the next month so you can get the best possible result the following month.
Harry is great, thanks. He is 3 months old and massive. And very easy-going.
Let me know how things go for you – fingers crossed for a better result next month.
F xxx
March 23rd, 2010 at 12:13 pm
Hi Fiona,
tanks for your reply…I only had one good size follice after being on the max amount of stimulation…2 others were smaller, but werent good enough…so we had to cancel.
Im still waiting on af to arrive since the cancelled cycle, that will give us 1 month off to relax…& get a few more bloods done.Im gettin the fsh & a few others done..the LH E2 & AMH…& d doc will scan me during this month off to see how the follies are responding naturally…so she can judge better for the following month.
Its still a streeful time, & dh has lost his job too..!! & now theres talk of rehab not working on my dad & him being in full time care & not ever coming home, which does upset me & in turn causes stress…Im hopin after this month off the follies will kick back in & start growing properly!!!
I dont know if you remember I mentioned before my dh had tested positve for the sperm dna fragmentation test, which hes being medicated for & is on a low oestrogen diet to help reduce the frag level, well hes due to be re-tested in April,..
Its been on my mind, if that was our main problem (as all my tests up to now have been fine) & dh test comes back fine, would it be worth trying again ourselves…to see if things work out naturally, or would I be mad to even think of goin again without any med help??? maybe its just me head working overtime!!!..
anyhoo..tanks for listening..talk soon.
May 10th, 2010 at 10:35 am
Grainne – I’m sorry, I’ve only just seen your message. I’m set up to get email alerts whenever someone posts but it hasn’t been working properly in the last few months. I was just thinking about you and that you never posted news about your cycle and decided to see if I’d missed it.
I can’t believe you’ve had so much bad news in the last while. I’m so sorry about the cycle being cancelled, that is so devastating and stressful. And to add to that the news about your dad and your DH’s job, I don’t know how you’re coping with it all.
You have probably got the DNA fragmentation results by now. If they are ok, then yes, it would definitely by worth trying on your own. If not, will you try IVF again? Will the clinic try a different protocol? What does your doctor say about it?
Hope you are ok and that some things have improved for you.
F xxx
May 10th, 2010 at 3:49 pm
Hi Fiona,
no worries bout your reply, sure its great to get any reply at all…good to hear anothers thoughts on the situation..
Hows Harry? hope hes a good little boy, he must be getting big by now..& well settled in …
anyhoo..it was quite devastating to have to cancel the last cycle, ( I foolishly thought it would just work, as we have gotten preg so easily so many other times before just on our own) but it didnt work, & the follies just didnt respond. Def feel now it was down to the stress of what we were going through with Dad.
were actually having our next ivf cycle this week…due for ec either weds or thurs..
dh is still out of work & quite fed up with it all..dad is still in hospital & were now waiting on a full time bed in a local nursing home, he wont be coming home anytime soon…if ever..( hard to believe one fall could do so much damage to a perfectly healthy person) anyhoo..
the dna frag test is back, since last week..and after 5 mths of medication & v difficult low oestrogen diet, the level has gotten worse..!! imagine..dh & myself are quite pissed off with that…so the idea of even trying ourselves is out the window..
I have only 2 follies that have responded to the treatment this time…we cut out the down reg & only used stimulation this cycle, so were hopin (pinning all our hopes actually) on these 2 follies. I hope to God it works, as Ive never been so fed up with the whole thing. I feel the longer were at this
(3 /half years now) the less we are learning, we learnt that the main prob was dh’s sperm fragmentation, now we cant fix this…& now it seems my eggs could also be a problem ( I wouldnt wonder, with all this taking so long to fix, Im now 39 since feb) were also waiting on results of an amh blood, will tell more bout quantity of eggs left..Another problem that cant be fixed, unless we go for donor eggs & donor sperm which I feel, really isnt our baby..Just thats how I feel..like Id be a suurogate for 2 other peoples baby…
My head is a bit muddled with it all, Im not feeling very enthuastic about it all at the mo, very fed up…havnt even bothered to do any acupuncture this time, prob will get some after et…Just so down -wish we could get news about some aspect ….
anyhoo….dats all from me at the min, sorry for the down beat message…just sometimes its quite difficult to be upbeat when you really feel your getting nowhere…
anyhoo..talk again soon.
Gra
May 17th, 2010 at 9:40 pm
Sorry to hear things haven’t got any better with your dad. My MIL has been in full-time care for five years now and it has been so hard on DH. For the first couple of years we hoped she would get home one day and it was really difficult for everyone to accept that it wasn’t going to happen. I hope your dad recovers well and makes it home.
Your poor DH has a lot to contend with too – it must have been awful to find out the DNA frag results were even worse after all that effort. Please, please god you will get two good eggs and two good embryos out of this cycle. The very best of luck for EC this week and hopefully you won’t have to worry about what next.
F xxx
May 18th, 2010 at 3:59 pm
Fertility Clinics really helped a lot in getting my wife to conceive a child. Just make sure you get a reliable one..:,
May 21st, 2010 at 11:11 am
HI Fiona,
unfortunately, we dont have a good story to report..hope we will at some point in the future, but beginning to wonder!!
we only got to ec..& there was only 1 good egg…
and we got a call the following morning to say it had fertilised abnormally..so ivf didnt go ahead..that was this day last week…
it does seem now that my eggs are causing a problem too..so Im awaiting an AMH blood to let us know how bad the egg reserve actually is. this shud have been done 4 wks ago, but the clinic forgot to send it off..
if this shows a bad results its egg donor…& abroad as the cost of this here is 12,000…& it can be dont abroad for 4,500…( BIG DIFFERENCE THERE!!)
Anyhoo..Im looking into prices & waiting times & recommendations for clinics abroad at the mo, just to be ahead & be ready when get the AMH result back…
then we’ll know what direction were goin in.
May 24th, 2010 at 12:00 pm
I’m so sorry Grainne
It’s just not fair, you have been through so much already. But I am glad to see you’re happy to move ahead with treatments if necessary – I was the same, always making sure there was a backup plan. So you will get your baby one way or another.
September 6th, 2010 at 11:23 am
Hi Fiona,
Just to let you know how we got on with our treatment…as you do seem to be in contact with a lots of press..etc..& I tink some of this is interesting..
as I mentioned in my last post of May 21st, our last ( 2nd ivf ) didnt work out.
My AMH came back very low, bordering menopausal..so with that we decided donor egg was for us ( I recoiled at the thought of this for us when I heard it first) the thought of a little of me never being passed down the line to my own kids did upset me..& I always imagined that I would have some genetic impact in my own child.
anyhoo..Ive gotten over that..& this is the only was forward for us to have children.
I looking into treatment abroad as I had said before, the cost of donor ivf here in Sims is €12,000. This is just for basic treatment, we would also need icsi..( because of dh’s sperm dna fragementatio issue) and we also wanted genetic testing to eliminate any possible future problems, ( due to my recurrent miscarriages) so the actul costs here would have been several thousand more than €12,000.
The cost of treatment where we went ( Zlin clinic Czech Rep) was €3,900. ( a considerable difference!) as my dh is out of work since feb this year & we are at the end of four years of all sorts of treatments etc for this, our bank balance is considerably low…so money was indeed a factor in our decision..but I did check out several other things & had communications with other sucessful clients to this clinic. They had quite a short wait period, they are connected to a university, so they have a constant fresh supply of proven tested donors..& their sucess rates are very good..so we decided to go there.
our treatment was 2 wks ago & we tested positive last week. Obviously Very early days ( & Ive been here before with my natural pregnancies -only to end in miscarrige 7 times, so Im waiting til my first scan in 2 wks to celebrate)
but it a positive story…
I find the details of whats available here in Ireland ( especially cost wise is so ridiculous….we are being so taken for a ride with these clinics in terms of costs….its not right..
But just wanted to share our news & the details..
hope to have a more def pos note after scan in 2 wks time!!
Talk again soon..
Hope your own little Harry is doing well!!
Grainne.
October 6th, 2010 at 11:41 pm
Oh Grainne, that is the most wonderful news!!!! I’m so glad that things moved so quickly for you and that you had the courage to keep going.
Hoping for a positive update soon!
October 7th, 2010 at 8:08 pm
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October 11th, 2010 at 9:51 am
Hi Fiona,
I just see your reply..Im still doind ok, at 9 & half weeks at the mo..& no complaints…so hopefully this one will stick..
Wish there was more interest & investigation into the costs of treatments here..there has been some programmes bringin up the subject of late..hopefully something might come of it all..its awfully expensive for people, especially in this climate when people can really be excluded from having their chance of having children because of lack of funds..
anyhoo..tanks for the reply.
October 12th, 2010 at 11:03 pm
That is brilliant Grainne, hope it all goes smoothly from now.
I have just set up a charity to address the cost of treatment and to raise money for couples who can’t afford private treatment – http://www.pomegranate.ie. Hopefully some good will come of it!
Keep me posted!
October 19th, 2010 at 4:22 pm
Hi Fiona,
I have seen this charity and what a great idea it is…
some fortunate couple/ couples will get to avail of this, its a fantastic idea..Well done to you…Its brilliant.
I really am interested in making people aware of the high prices for the various fertility treatments here in ireland compared to the costs abroad.
I have emailed the tax office to try and get the clinic I attended & others added to the list of clinics you can claim tax back in relation to medical expenses….
hopefully some good might come of it..its amazing how many Irish are going abroad now for treatment, bacuase of lower costs away from home.
talk soon,
Grainne.
November 8th, 2010 at 12:54 pm
So presently, you can’t claim back any medical expenses incurred abroad? Well done on trying to get something done about it.
Hope your pregnancy is going well.
November 12th, 2010 at 5:01 pm
Hi Fiona,
well you can actually claim back through your tax ( Med 1 form) for some clinics / hospitals abroad, but as yet there are no clinics / hospitals on the list from Czech Rep…which is where a lot of Irish are goin to for treatment which is a fraction of the costs of the same treatment here…e.g. typical ivf with icsi here can be up to €6000..here and is only €1900 in Czech ( in more than one clinic there too..)
and donor ivf is €12,000 here (without meds or icsi etc) and its €3,900 all included ( poss extra €500 for meds) in Czech…
soa big difference…and most health insurance co dont cover for ivf..though Quinn do a once in a lifetime €1000 back on ivf treatment…
still awaiting reply from Health Board..but Ill keep on at them..Hopefully with a good outcome for everyone…
December 10th, 2010 at 3:08 pm
Hi Fiona…
Just an update…finally got to talk to someone in the Dept. of Finance this week. ( someone who returns phonce calls & knows what theyre talking about!!- makes a change!)
anyhoo..it seems, if where you got your treatment isnt listed on the list of hospitals that we ( Irish people) can claim on our tax Med 1 form…we can request the addition of any other hopsital to this list.
This involves gettin a letter from the hospital in question to say they provide 24hr care..& a brief explanation of their hospital, together with a letter from their respective health Board to back it up & also a letter from the person recommending the addition of this hospital to the list…this you submit to the Depf. of Finance…
On the other hand if where you attended for your treatment is a clinic ( i.e. does not provide 24hr care ) it seems we can automatically claim back fro treatments in clinics on our Med 1 form…
Im delighted as we did attend a clinic..so I can get back 20% of what we spent..I never thought that would happen..
Just wanted to let you know…as you might let others know of this situation, it might help & encourage others..knowing they can get money back to ally some of the high costs…
Talk soon,
Grainne ( 18wks, & counting..all healthy & goin well T.G.)
December 13th, 2010 at 6:06 am
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April 4th, 2011 at 3:54 pm
Must delete spam. But just checking in to see if all is going well with you, Grainne.
April 6th, 2011 at 10:10 am
Hi Fiona…
nice to hear from you…I didnt post here for a while when I saw the spam..didnt tink you were still reading here…
Im doing fine..great actually..Thank God, finally were just there, only 5 weeks to go..
we have an appointment with the gynae today..so he says with my history, he might bring me in on 39th week..so possibly only 4 wks to go!!!!
but all good..& cant fauly Zlin & the treatment that we had that got us here…& since weve been I have been able th eclaim back 20% of the cost of our treatment in that clinic..so that a plus..also others from Ireland are going there the whole time…so hopefully people will get to hear of the good quality, affordably priced treatment available outside Ireland…as the costs here are prohibiting some couple of a family…its just so not right…
But tanks for thinking of me…& hopefully on my next post, Ill be telling you if we had a boy or girl!!!!
Hope Harry is being good for you, he must be getting big now..any longings to start again??!!!
talk again soon,
Grainne.
April 7th, 2011 at 10:11 pm
Fab news Grainne – almost there! Let me know when you have some news.
As for me, I am done. I’ve had plenty of longings but luckily I have a sensible husband who refuses to entertain any of my crazy notions. And really, I am just so happy with my three, I feel like it couldn’t be any better.
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June 21st, 2011 at 11:47 pm
Hi Fiona,
hows things with you..our gorgous baby girl arrived on 17th May..Thank God…Life has just started for all of us in this house!!! shes a little dream…just so pretty…Cant believe shes here after all our waiting…almost 5 yrs…
Had a read of your post on your main page..breastfeeding & fertility..Im feeding lyself..& have a longing already..to take advantage of whatever fertile time we might be given…as we might never get this change again..
might get back you with a few more questions when the time is right & Im more tuned into everything…
Anyhoo.better go into bed.get sum sleep before night feed!!!
Gra
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