Hi everyone, This is my first time posting here. I have been diagnosed with Stage 4 Endometriosis and in the laparoscopic procedure my gyne was not able to do anything as he said the peritoneum is covering my ovaries and tubes. So he was neither able to drain the cysts nor clip the tubes (Hydrosalphinx). I am 33 and trying to conceive with low AMH. The initial plan was for him to clip the tubes so that I can get IVF done. However he was unable to do it. He also said my bowel is stuck to Uterus firmly and need a bowel specialist to help in the next surgery. He has referred me to an Endo specialist here in Dublin and the waiting period just to get initial consultation is 5months in private.
Appreciate if you can share any similar instances and provide some support.
Thanks
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Bluecolli
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Hi bluecolli, I'm very much similar to yourself, was diagnosed in 2023 at age 29 after attending a and e and was in surgery straight away to which they drained a significant portion of blood from my abdomen and I was diagnosed with stage 4 endometriosis, blocked tubes, frozen pelvis, obliterated pouch and I have recurrent heamorragic Acites.
I have to say my story isn't positive in terms of fertility... I've had two rounds of IVF. The first only two eggs collected and the second a better response but I ended up in hospital with a severe reaction from my wndo. If both your tubes are blocked conceiving is pretty much impossible naturally (this was our experience and what I was told by the surgeon and my now endo specialist)
I'm awaiting a discussion around excision surgery with a specialist as despite trying all sorts of medication, my periods stopped for a bit but then came back.
I would say I have seen other girls at stage 4 go through IVF and it is possible to conceive however it is quite rare if you are at this stage. I've also got adenomyosis which significantly reduces the chances of IVF working.
I know this isn't too positive but I hope it is helpful? Generally fertility treatment will be done first as it isn't recommended to have surgery before due to damage that can affect collection etc. Later down the line but this would only be for pain.
Hi Eeshpeesh1994, Thanks for your response and sharing your story. I do understand that natural conception is not possible with blocked tubes. My gyne has also adviced to refrain trying for a while as there is a chance of ectopic pregnancy which could be life threatening for me. I am in touch with fertility centre to get the eggs collected and embryo freezed. Given the low AMH, I am worried about the count of egg retrieval and the quality of egg. Just being positive at the moment and hoping for the best.
Hi I bluecolli. Yes that's all you can do. It's an absolute marathon and the waits are awful - we ended up going private just for the specialist appts and MRI to which I was transferred to his specialist lost on the NHS and he has been fantastic. I know removing the tubes at stage 4 will not necessarily help with IVF - it can actually make things worse in terms of egg collection. Lots of people talk about fluid from the tubes impacting embryo implantation but it all depends on where your blockage is.A low AMH can still yield good results for IVF as it only takes one but it's the quality that can be massively impacted by endo depending on where it is.
It is awful because no one can predict how you'll respond as everyone is different but I do wish you all of the luck and the main thing is to stay as safe as you can. You're also treat with medication that will treat endo lesions beforehand but this doesn't do anything for adhesions. Sending as many positive vibes as possible.
Hi Bluecolli, I am sorry to read about your experiences. Quite similar to myself. I am 36 and was diagnosed with endometriosis back in Jan 2023. Both my fallopian tubes are blocked with hydrosalpinx. I have very low amh and my hormone bloods are a bit all over the place- the stress of all of this isn't helping.
We are living in Northern Ireland and had a round of ivf under the NHS last December which unfortunately didn't work. The hydrosalpinx wasn't treated as it was something I didn't know much about but I became obsessed with it during the cycle.
We explored the options of going abroad for ivf and the clinics we spoke to told us that they wouldn't do ivf with me unless the hydrosalpinx was sorted. We settled with clinic in Alicante and the plan was 2 rounds of egg collection, tube removal back home and then hopefully embryo transfer.
In August of this year I was v sick and in hospital. I was treated for a bowel infection. My CRP levels (inflammation) were 210 (they shouldn't be higher than 5). I was convinced it was the endometriosis but this has not been confirmed. I got signed off work and I'm still off. I know the mountain ahead of me and had the view that I'll be taking time off for the surgery (I was told that surgery would be between 3-6 months and that was in July). I still haven't been called for it yet.
We went over to Alicante in Oct and had our first egg collection. We have 3 frozen embryos but our doc is really keen to get these pgta tested. We went again in Nov but sadly the cycle got cancelled on day 9. We were over in Spain because it is soo expensive and stressful to get the scans here. I took the pill and my period is due on Friday so I've a scan booked to count follicles and all being well we will start the stims Friday night and head over next tuesday.
I'm keen to hear about your endo specialist. They are few and far between on the island of Ireland. Are they going to remove your tubes? Can you get your tubes removed? Happy to pm if you have any questions xxx
Hi Endowarrier36, Thanks for sharing your story. The waiting period I a lot here in Ireland and I am frustrated about it. Without clipping the tubes or removing the tubes, no one is proceeding for IVF. Honestly I can understand the reason to do so. But what’s frustrating is that I have to wait for a long time to even meet the doctor. My previous gyne just washed his hands off me. So I am hanging by the thread now. I am thinking seriously about travelling to India (I’m from India) and get the treatment. In India, things happen at a fast pace but I’m worried on the quality of treatment given the complications of bowel, peritoneum blocking view to Ovaries, tubes via laparoscopy etc. My option to access ovaries and tubes is only laparotomy now. Sorry for the rant 😓
Hi Bluecolli, I'm sorry to hear you are going through all of this. It can be a very scary and lonely place but please know that you are not alone. Would it be worth exploring egg collection and freezing those first? Then you will hopefully have the surgery either in Ireland or India and then at least you have hopefully got some embryos frozen? Do you know of anyone who has had the surgery in India and if they could recommend anywhere? There is so much to consider but once you have a plan in place you will smash it. Getting the plan and coming to terms with it is really half the battle xxx
Hi Endowarrior36, I have started the discussion with fertility clinic and will be going through the egg collection/ embryo freezing process hopefully in next couple of months once all test results are available and cleared. Unfortunately I am the first one to have endo in my circle and hence unable to find a specialist in India. My friends will be helping out in Jan to help find a good endo specialist. Hopefully everything goes well. Thank you so much for your support ❤️
I’m sorry you’re going through this. Your Endometriosis sounds extremely similar in severity to mine.
I too have needed bowel surgeon to do all my surgeries joint with endo specialists. AMH was very low at 33, I’m now 38 and bloods show I’m post menopausal. Although menopause has done nothing to improve symptoms and disease is still progressing aggressively.
It is definitely worth waiting to see the Endometriosis specialist.
I’ve had 5 surgeries now including two excision, they’ve separated the bowel and uterus and bladder each time.
My last surgery they removed both fallopian tubes and left ovary and excused all disease which just grew back worse within months.
I desperately wanted to try IVF but they suggested I would have a better chance of success using donor eggs. Something I’d still love to do but don’t have a partner anymore which makes things tricky/ more expensive.
I do know of others who IVF has worked though and then they’ve conceived naturally very shortly after the IVF baby. This has happened to 4 other people I know with severe endo, one of whom went on to have two more children after the ivf baby! So although it didn’t work out for me, it is possible.
If you have any questions at all regarding severe endo and bowel endo, feel free to message me anytime.
Hi Lily1986, Thanks for the positivity❤️. It definitely gives some hopes. My next surgery would mostly be a laparotomy as they need to clip the tubes too which is currently not accessible via laparoscopy. I really hope next year turns out to be better than this year 🤞🏽
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