I am new here... I just had my 5th laparoscopy since I was diagnosed of endometriosis / fibroid / adenomyosis, and being passed on to different doctors (consultants and specialists)... I have had one failed IVF (which was self funded), and now I have been told there is a risk of loss of womb if I want the recently discovered issue (bowel stuck to uterus) to be addressed. I do not have a child yet, and I have been recently divorced because I couldn't have a child after 4 years and 6 months of marriage. Has anyone been through a similar case? How did you cope? Thanks for your time.
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Emede
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Hi Emede, this sounds incredibly tough for you. Are the hospital providing you with any support regarding this? I am at the early stages of diagnosis (after over 10 yers of symptoms) so I do not yet know my fate in terms of fertility. I am 34 and recently married so I understand I may have some hard conversations regarding this to come. I have been reading the NICE guidelines and they suggest you should be offered support at every level including fertility and emotional support of some kind. So I hope you can get some professional support. Otherwise, groups like this may help. Do you have a local endo group you can join and talk to people about you experience?
What I would say is, try to explore your options. Do you really have to lose your womb, what are the alternatives? It’s your body so your choice. I’m sorry you are having to go through this and obviously I don’t know all the details but I hope you can find some comfort somehow x
Hi Endo_This, many thanks for your time and your concern. Unfortunately, I am not getting any support whatsoever from the NHS. At the first instance, I was told I wasn't qualified for IVF by the NHS due to the fact that my husband wasn't a UK resident (He lives in Texas and visits every 3 months). Even when I tried to explain that I was the patient here (the one with the problem), and that most of the adhesions I now have is as a result of the first surgery I had with the NHS (which led to some complications). To make things worse, I do not think NICE guidelines cover single women who desire to have a children.
With regards to the options, following my 5th laparoscopy few days ago, a section of my tubes were removed to ease with the period pains. I am only left with the IVF option now. I have been advised to go try another IVF round before any surgery.
With regards to your case, you can try for pregnancy. I know of someone who got pregnant naturally with endo. Else, you should be qualified for a 2-3 IVF cycles by the NHS. I hope all works out well for you ❤️.
I see, I feel frustrated for you. While the NHS can be amazing, it just doesn’t seem to be cutting it when it comes to endometriosis. I do have a friend with endo and her experience has been similar to yours. I guess I am hopeful that if guidelines are there then they will be adhered to. I hope you can get some support in dealing with this, even if you have to find it yourself. I am sorry I cannot offer you advice, I may well be in a situation in the future if I cannot conceive. Thank you for sharing your response and I hope you have success with your next round IVF before Surgery if you take it x
Im sorry you are going through such a torrid time with your endo. Im 37 and have just had both tubes entirely removed during a 2nd Lap. I also have stage 4 endo affecting prodominantly my bowel which has such an effect on day to day life. I have no children and we are now considering self funded IVF.
As others have said Endo is not up there as a massively known and dealt with condition on the nhs.. however my advice would be do your research, as there are some endo specialists out there who do take it very seriously and can be seen on the nhs. I have had to wait a year to have my lap due to waiting times etc, but thankully my op was performed by a brilliant endo specialist and even though the condition cannot be resovled they are helping with management so its worth the wait for those that truly specialise. I hope you find some light... endo is a devasting and mind boggling illness and coming to terms with it and managing it is very hard - you just need the right people behind you.
Hi Emede, it sounds rubbish and I’m so sorry you’re having to deal with this. I went through a failed ivf cycle earlier this year- it was Nhs funded but that was the only one I got as despite NICE guidelines, my nhs trust only funds a single cycle. I knew at that stage that my right ovary was pretty defunct (I’d had a large endometrioma removed a year before). At my second (private) cycle, They discovered during the egg harvest that my ovary, bowel and uterus are all stuck together and that the nurse had wrongly (and appallingly) mistaken my bowel on the scans for follicles. Only one embryo from the other side grew properly but I’m delighted To say that I’m now 21 weeks pregnant and so far the endo hasn’t caused me pain. Perhaps some twinges and my placenta is very low which is more likely with both ivf and endo but I know some women do suffer from endo pain during pregnancy and I feel very lucky not to.
So really I wanted to give you some hope- I know our cases aren’t the same and you must have gone through an awful lot worse to have had 5 laps, but my bowel uterus and ovary are all stuck together and ivf still worked for me against all the odds (I’m a v poor responder). I really was steeling myself for 7+ rounds with donor eggs. I’d thoroughly recommend a very good clinic if you do decide to try again - one that regularly takes on difficult cases with success and really understands your endo. They’re a little more pricey but I think mine was perhaps just £1-2k more than self funding at my nhs one. And I trusted them because they discouraged me from some pricier treatments and helped me get some tests done through my gp rather than charging. Do pm me if you want a recommendation. Id also recommend trying to get yourself as healthy as poss before diving into the next cycle to give your body the best chance - For at least 4 months prior, i embraced the endo diet, cut all hormone disrupters like chemical laden toiletries and cleaning products, cut back anything that made me stressed and invested in my sleep. Prob nuts but it made me feel I was doing something pro active. And if I wasn’t actively trying for that run up, I’d consider serrapeptase- I didn’t as I didn’t want to be actively ttc whilst taking it but if there is a gap before you try ivf, it’s worth considering. Others on here might have better input on that.
And overall I wish you huge luck, bravery and that those closest to you give you all the support you want. I’m so sorry you’re having to go thro this. With love. X
Many thanks for sharing your experience with me. I am happy you had a successful IVF, congratulations 👍🏽. I appreciate your help with the recommendation, as I was considering going out of the UK to try another IVF cycle. I will pm you if you don't mind, for help with the endo diets and other stuffs. Thanks once again. X
I have been through a very similar situation. I have severe stage 4 endo and found out in my laparoscopy three years ago that I have the same problem. I was trying to get pregnant but they found my bowels were very stuck together with endo so the risk with more surgery was too high. We persevered with ivf and was lucky enough to have our little girl. The only thing that's helped me deal with the pain since having my little girl is with the zoladex injections (fake menopause) and I come off it to when we're ready for ivf again. We're currently trying for baby number 2 and our gynaecologist is of the same opinion again, surgery is too risky and could ruin our chances of further pregnancies so we're trying to manage it until our next go at ivf. I also got Naproxen tablets from the GP which is a strong version of ibuprofen. They've helped a lot in coping with the pain bit obviously don't take if there's a risk of you being pregnant. Best of luck with it all. X
Many thanks for sharing your experience. My case got worse due to the many surgeries I have had, I would advise you stay off surgery as much as you can. I have been on zoladex for the past 7 months, so I have known peace for a while now but my fears grows bigger as I have been advised to stay off Zoladex to allow for another round of IVF (this is my fourth round of 6 monthly treatment). I can't live on zoladex forever 😢. From your story, I have hope now that I can get pregnant too. Congratulations for your first baby, and I wish you all the best for the second one. X
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