Fallopian tube removal?

[Noodle31]

Hi everyone. I've been diagnosed via ultrasound and MRI with stage 4 endometriosis. This includes large bilateral endo cysts. I was chatting to a fertility specialist recently and he is adamant that if there is any damage to my fallopian tubes, they will have to be removed. Has anyone experienced this and gone on to become successfully pregnant? This has all come as a horrific shock to me (on top of the shock of the endo diagnosis start of the year). Obviously natural conception will be off the table, so I'd be looking at IVF - but I am desperate to have a family of my own.

[Cmc2020]

Hello This is heartbreaking

I have had two ectopics and it resulted in both tubes being removed

I am undergoing Ivf and have 7 frozen embryos if there badly damaged you should get them removed I got told and never listened and had two ectopics but least I tried that’s what I say it’s up to you but it’s the worst getting told that and hope your ok

On the plus side if your tubes are damaged and you get Ivf it’s a better success rate if the damaged tubes are removed because they can leak fluid that harms your embryo xx

[Faith103 in reply to Cmc2020]

Something similar happened to me. Stage 4 endometriosis I also had an ectopic lost a tube. I still have one tube but I went straight to private ivf as I did not want the same to happen again with the other tube. CMC2020 is right it’s prob a good attitude that if the tubes are damaged to get them removed. There is always ivf. Good luck with whatever happens xxxx

[Noodle31 in reply to Faith103]

It's so great there are so many people who can share their experiences, however awful. Ge said it would be to prevent an ectopic. That must have been awful to go through. Did you have endo cysts? I think he is concerned as I have bilateral endometrioma.

[Faith103 in reply to Noodle31]

I had cysts on my ovaries the first time was on my left ovary and the second time was on my right. Where did he say you have the cysts? They removed both my cysts however on my first ivf it caused issues getting the eggs, however I still managed to get a decent amount of eggs xxx

[Noodle31 in reply to Faith103]

I have endo cysts on both ovaries - a very big one on the right and smaller cyst/cysts on the left. I'm going in for a scan with him next week to see whether it would be possible to do a first egg retrieval before surgery, as obviously nothing is opening up again for a little while. He isn't sure that would be possible given the size of the cyst on the left, but I guess we will see!

[Noodle31 in reply to Cmc2020]

Thank you so much for your perspective. I thought it was better to ask some opinions before just freaking out. Obviously my first response is out and out refusal at the thought of losing that part of me. But I plan to freeze eggs (or probably embryos with a donor - I'm single with all this happening, which is not fun but does mean I have that option). I hope you get your baby from those embryos and I'm so sorry you had to suffer through an ectopic.

[Faith103 in reply to Noodle31]

How old are you if you don’t mind me asking.? My best advice would be try and get your eggs and embryos in the freezer then concentrate on pain management because the more surgery you have the more eggs you will lose. I didn’t know that but I’ve had 2 surgeries in 7 years and my AMH was 31 after the first surgery and after the second one it dropped right down to 14.1. I was shocked it had dropped so much but they said it’s surgery that takes the egg reserve. I mean in your situation they might say get surgery first as you will get a better number of eggs. Go with your gut. It doesn’t matter about having a partner just freeze the eggs or donor like you said. Where mainly is your endometriosis? Xxxx

[Noodle31 in reply to Faith103]

Hiya. I'm 31. AMH was 17.6 when tested mid-March. There is bound to be collateral damage with the endo surgery I'm sure. He's also been pretty clear with me about that. If I can get some embryos in the freezer beforehand safely then obviously that would be fantastic - it is ultimately up to the doc and clinic whether it is safe.

I was initially planning egg freezing but I've since heard that embryos have a much higher survival rate - plus honestly, I think it will be more ethical for me to go down the single mother route rather than find a guy quickly and basically make him my sperm donor out of desperation. If I meet someone fantastic later I would hope they can also love any children I am able to have. Men can sometimes 'come and go' anyway, so at least I'd have given motherhood my best shot if that doesn't happen.

I have not even had a laparoscopy yet, but I have endo cysts on both ovaries and from the MRI it seems my uterus is partially adhered to the bowel (not deep infiltration, they were quick to stress). So I guess until surgery all I know is that.

If you are a similar age to me then I wouldn't freak out too much about that shift in AMH over a 7 year span. It is a lot, I know - and surgery won't have helped. But endo cysts also mess with egg reserve and even just the difference between being say 24 and 31 makes a big difference to your reserve. Also remember it is the quality of the eggs - cliched but you really do only need one. I wish you all the luck in the world with your IVF.

[Faith103 in reply to Noodle31]

Thank you. I am the same age as you I’m 31 as well so the drop scared me a lot. I’m lucky my partner understands and he wants the same as me. Your are right if you meet someone in the future if they love you enough you having a child won’t be an issue. Oh them MRI scans I had one in March. I hate them. They have said that since my surgery last year in sept my endo is coming back on my bowel and my pelvic wall so I’m hoping to get as many transfer in place before it progresses more. They have said my womb is okay which is what is giving me hope. I’ve been pregnant 3 times before so I’m hoping il get my miracle. To be honest I’ve only been with my current partner about a year and a bit but before I met him I was thinking of going down the same route as you. You have to think about your future and what makes you happy. Have you got any idea of when you might be having surgery xxxx

[Noodle31 in reply to Faith103]

No idea at the moment - though hopefully over the summer! I don't think elective surgeries are even opening up again until July at the earliest...which is awful but not much we can do.

[Faith103 in reply to Noodle31]

I feel for you I had my surgery last year and my pain is already coming back it’s awful. My surgery got cancelled last year 3 times and then I fell pregnant with ectopic and it caused my specialist to push me to the top of the list. It’s a shame it took that for him to take me seriously. Like you said just have to be patient but I know how hard it is I had it all this time last year. Maybe go on contraception to slow the endo down before surgery xxxx

[Noodle31 in reply to Faith103]

It's been a weird ride. I only found out about this as I felt a lump in my abdomen. Went to the GP, she thought it was a hernia! So shocked when they told me I had big endo cysts both sides. Though it made sense. So that was January and it has just been insane since then. Very angry about late diagnosis, as I've always been fobbed off as just having heavy periods etc. I've been on the pill since March - my surgery date was actually changed four times and cancelled twice just within that month...when I was already in the ward wearing my hospital gown. I was down as an emergency and then BAM Coronavirus hit. Immediately asked to be put on the pill continuously in the hope it would as you saw slow the endo. Still in quite a bit of pain and taking codeine for that. Even a four day stay in A&E didnt lead to them operating, and I've ended up relocating to live with family because this is pretty difficult to manage alone, in lockdown. The ectopic must have been awful, I'm so sorry. At least you are clearly able to fall pregnant and hopefully via IVF they'll be able to help the pregnancy stick.

[emily92353]

Hi, I haven’t had any children however I have had both my tubes removed in February this year. I am undergoing ivf soon. The surgery was keyhole.

[Noodle31 in reply to emily92353]

I'm sorry to hear about the tube removal - was that in prep for IVF? I have heard some clinics prefer that if tubes are blocked etc. Best of luck with your IVF - I wish you every success!

[emily92353]

Yes it was in prep for the ivf, it’s less likely to work if the tubes are left in. Thanks!!