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Original poster

Would you have endometriosis surgery if you didn't have much pain, but you are infertile?

20 replies

BurstThrough · 30/04/2023 16:48

I have advanced endometriosis (stage 4, and on bowel) but apart from constant lower back pain which worsens monthly, I don't experience strong period pain or cramps.

I am however infertile. TTC naturally hasn't worked and two rounds of IVF haven't worked. Only after that did I find out I have endo.

The thing is, I am now 40 so my eggs are low quality, so the chances of successfully TTC naturally after excision surgery are going to be pretty low. (But if I don't have surgery, the chance is zero.)

I got the impression from my surgeon that due to the fact I am not really crippled by pain, and due to the very high level of risk in the excision surgery (potential stoma, infections, long recovery time etc), he doesn't really see the point of going ahead with the surgery, but he will do it if I want it.

Is he right? Would love to gather some views. Thank you.

OP posts:
Original poster
BurstThrough · 30/04/2023 17:59

Bump

OP posts:
polkadotpixie · 30/04/2023 18:13

I did last year. I'm 38 and suffering from secondary infertility (although we struggled the first time too)

I always had painful periods although they got better after I had DS but I always suspected Endo

I had a laparoscopy and they removed an endometrioma and unstuck my womb from my bowel and my appendix from my ovary and flushed through my tubes. Unfortunately I'm still not pregnant but I'm glad I had it done

jackstini · 30/04/2023 18:16

Have they done a D&C yet?
Less major as a surgery and that worked for my friend. (Appreciate every case is different)

Original poster
BurstThrough · 30/04/2023 18:28

jackstini · 30/04/2023 18:16

Have they done a D&C yet?
Less major as a surgery and that worked for my friend. (Appreciate every case is different)

Oh yes, I had every test going - my tubes were declared textbook, it was 'unexplained' infertility! However I know unexplained merely means they haven't found the cause of it yes, so I asked for a lap.

Thanks @polkadotpixie. The surgeon seemed to imply that there was no point doing it given the risks associated with the surgery, as I don't have painful periods and that I'm basically too old now meaning TTC won't work... 😐

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Original poster
BurstThrough · 01/05/2023 12:01

Just bumping in case there are any other MNers with wise experience! Smile

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Mama05070704 · 01/05/2023 12:12

Is it a general Gynae consultant you’ve seen. My situation was very similar to yours; severe endo involving the bowel, required IVF etc. I saw several consultants, all of which told me it was too risky due to risk of bowel damage etc. However, I recently asked to be referred to an endo specialist at one of the specialist endo centres and he seems more than happy to operate. You have the right to request to be referred to a centre of your choosing through NHS’ right to choose.

OurChristmasMiracle · 01/05/2023 12:14

I have endometriosis pcos and a split right ovary. I had surgery for the second time in December 2021 and had my implant removed March 2022- my youngest son is 4months old now- I got pregnant pretty instantly so yes I would have the surgery personally.

Original poster
BurstThrough · 01/05/2023 13:21

Yes, it was a surgeon at a BGSE centre, who specialises in fertility! That is why I feel so confused by the attitude of, "it's a lot to go through and you are 40 so on the scrapheap fertility wise so is there much point if you're not feeling any pain?"

OP posts:
Original poster
BurstThrough · 01/05/2023 20:04

How old were you when you had the surgery, if you don't mind me asking @OurChristmasMiracle?

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OurChristmasMiracle · 01/05/2023 20:31

I was 33 when I had the surgery.

WhatNoReally · 01/05/2023 20:45

I had surgery at 33 for stage 4 endo. Infertility but practically no pain. They removed cysts from both ovaries and had a general tidy up. My bowel is adhered to my uterus and they didn't try and fix that, I think because I'd already been in surgery hours and it was a much bigger riskier job.

I did get then pregnant but it took 6 rounds of IVF over 2.5 years.

The original gynae said I'd be 'a good candidate for a hysterectomy'! A good few years later another scoffed at the idea of major surgery when I'm practically asymptomatic.

It's a hard one at your age OP. Your odds of conceiving are not high irrespective of the endo. Sorry to be blunt.

I think I'd ask whether they can remove adhesions without working on the riskier bowel issues.

Original poster
BurstThrough · 01/05/2023 22:14

I totally agree the odds of conceiving at 40/41/42 are low. And then the odds of that pink line making it to a baby are even lower.

The thing is, if I do nothing… the odds are zero.

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suburbophobe · 01/05/2023 22:29

the very high level of risk in the excision surgery (potential stoma, infections, long recovery time etc

This would personally alarm me OP the thought of that.....

I'm so sorry you are going through this OP - and all of you on this thread - and the added stress of infertility...

I had endo many years ago. Am clear now (long past the menopause), took progesterone for it for 8 months as well as lots of alternative stuff, acupuncture etc. Treating the whole, so to speak.

Philomenacunk1 · 21/11/2023 05:45

I had surgery recently. I was in the same position as you in that the endo wasn’t causing pain but was affecting the bowel. Infertility wasn’t an issue for me (child free by choice). However, the surgeon said that they don’t usually advise taking no action where the bowel is involved. It’s a progressive disease and the longer it’s left the more likely it is to cause serious bowel issues and the harder it will be to remove without ending up with a stoma.

ILikeMyMenLikeMyCoffeeWhiteAndWeak · 21/11/2023 05:59

So you have..

  • low risk of pregnancy
  • high chance of a risky pregnancy if you do get pregnant
  • higher chance of a disabled baby
  • risk of permanent damage needing a stoma for life
  • definitely a major operation
  • medical opinion not to do it
  • potential risk of complications and infection of operation

I wouldn't have the surgery because the cons outweigh the tiny sliver of hope of a healthy pregnancy and baby. I'm sorry you are in this position and I wish you good health regardless of what you choose.

ILikeMyMenLikeMyCoffeeWhiteAndWeak · 21/11/2023 06:01

@Philomenacunk1 jesus we have resurrected an ancient thread! Grrrrr

Original poster
BurstThrough · 21/11/2023 11:26

I think your third bullet point is an awful thing to write on a parenting forum. I truly hope no parents of much loved “disabled babies” ever come across your post.

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Philomenacunk1 · 21/11/2023 20:32

Oh no! I’m usually the first to roll my eyes at people commenting on Zombie threads! 🤦‍♀️

ILikeMyMenLikeMyCoffeeWhiteAndWeak · 22/11/2023 08:39

Dont be so ridiculous! It's a serious consideration whether your child has a high chance of disability that's why things like awareness and promotion of folic acid, extra prenatal tests, genetic counselling exist. HCPs discourage geriatric pregnancy. It's a recognised risk. Nobody sane would actively try or wish for a disabled baby because of the long term consequences for the child and family.

Original poster
BurstThrough · 23/11/2023 05:35

I think you’re being the ridiculous one - and hugely insensitive with it.

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