Pregnancy, endometriosis, birth and scar tissue... Please share your experience

[Reen_Bean]

Hi everyone,

It's been a long time since I've posted. After quite a struggle my husband and myself are extremely lucky to have gotten pregnant. I am now 33 weeks. This is a long post but if you have time and experience I would be very grateful for your advice/ to know your experience.

I have had 5 surgeries in total - 2 investigative, 2 extensive excision and 1 to remove my appendix. I also have had cauterisation on my cervix twice. I have a lot of scar tissue. My endo has come down so far it could be felt during an internal so I know a lot of surgery was done low down and around the pouch of Douglas. Both excision surgeries removed a dinner plate size of endo.

The growing baby has been tearing her way through the scar tissue and it's extremely painful. She is currently breech and the midwife believes it could be scar tissue blocking her from rotating, they problem is that you can see the scar tissue on the ultrasound. The consultant I have seen seems very dismissive of my history but I am growing concerned that the scar tissue may cause complications at birth. So I'm not sure if I should be more forceful when I see the consultant. He has never asked where the surgery took place, how much was removed, where the endo was. He hasnt checked my notes from my gynae consultant. To me he seems to be dismissing my history which worries me.

I am worried that the scar tissue my block baby, or that I may not dilate. At the ment the Dr has said my labour can be moved midwife led as there are no risk factors and he could be right. But this is my first pregnancy and I would like to be sure that is the case.

Does anyone else have experience of pregnancy, birth and scar tissue?

[NoEndoInSight]

Hello Reen Bean, I can’t help much I’m afraid as I’m in exactly the same boat. I’m 28 weeks and I’ve had quite a bit of pain and various complication that seem likely to be related to Endometriosis (inflammation and scar tissue etc.) but my NHS Trust’s official line is that Endo is dormant once you become pregnant. So although I keep being told I need specialist advice by general maternity services there is no funding for a referral to an Endo specialist for anything pregnancy related. I have 28 years worth of Endo scar tissue in my Pouch of Douglas between my Uterus and Bowel and also my Uterosacral Ligaments and various other sites within my abdomen so am also quite worried about how tearing in those areas might be dealt with - particularly if I give birth in the middle of the night or on a weekend when there aren’t any specialist surgeons on call. Due to a separate referral to a Foetal Medicine specialist to discuss medication for another condition, I did manage to get a small note added to my maternity folder saying “check for Endo scar tissue tearing” last week. And my other half has read up on it so he’s prepped to step in and ask for that to be investigated should I be unable to come the time. That’s as far as I’ve managed to get in the way of securing an Endo appropriate birth plan to date... I hope you have better luck! x X x

[Bearl]

Hi ladies

I've had two children now and both pregnancies were painful due to scar tissue breaking. I was looked after by a consultant in Obs & Gynae who worked with my endo specialist so were fully aware of my background. I had to have planned c sections for both as I'd had so much structurally taken away during my surgeries.

Are you in a different hospital to the one where you had your endo surgery? If so could you ring the secretary of the endo surgeon and ask for a letter to be sent directly to the One and gynae team looking after you?

How about seeing a specialist womens health physio about the adhesions?

Hope that helps

Good luck

[Reen_Bean in reply to Bearl]

Thank you so much for this.

I got married and moved to my husband's home town which is in a different trust. And a lot of my notes are in paper form so I don't believe my obstetrician is aware of the extent of my surgical past. This is good advice. I will call his secretary now actually. Thank you xx

[Bearl in reply to Reen_Bean]

No worries. If there's anything else I can possibly help you with just hola x

[applebird]

Hi,

Firstly a lot of babies are breech at 33 weeks and right themselves (like my son) and you will dilate.... believe me.

I had 2 investigative and 2 major excision prior to pregnancy as well, endo could be felt internally too. Had continued pain throughout which perhaps was due to scar tissue tearing, but at the point of pregnancy I was due for another major for extensive endo and focal adenomyoma so I think this was rumbling on. Also I had to give up all major painkillers which in itself increases the amount of pain you feel from anything as your body adjusts. I had pregnancy acupuncture which I believe helped with pain and mental wellbeing throughout - when you're pregnant with endo history it's a stressy time!

Agree with Bearl re. getting info sent directly to obstetrician dealing with you - clearly outline your concerns and ensure you have them acknowledged, be forceful - AND about the physio - I developed pelvic arthropathy in pregnancy specifically because I should have apparently had physio post the major surgeries and this didn't happen (I am Belfast Trust so I know how long everything can take and how much of a shambles everything is health wise in NI).

So now to the birth stuff - and this is advice I would give to anyone who's about to have a baby for the first time - DO NOT be shy about coming forward with your concerns, what you think and what you want. I spent my entire pregnancy almost semi-apologetic asking anything and had a bit of a rollercoaster birth as a result.

- with me they weren't concerned about my endo history at all, more that my mother was diabetic so I was kept with hospital team and they decided to induce

- important info to know if this happens: no water birth, they bring you in and you are kept (none of this wandering about the house listening to Enya crap whilst waiting to go to hospital - that was what was peddled at antenatal classes, total rubbish), if induced they put you in a room with up to 3 other women - in my case the pessary worked for them and not for me - bring ear plugs and a sleeping mask (you may also need this in the ward after birth if it is busy esp in RVH - although that tends to be more in summer months).

- if you don't like the midwife get rid of them straight away - mine wouldn't wait for my husband to arrive, filled me full of drugs when off my face on gas and air and told me she 'didn't enjoy her job and wasn't sure what to do with her life'. The second midwife was AMAZING, like a dream and I loved her. Other options are always available push for whats best for you and don't be worried about peoples feelings

- make sure one of the people with you be it husband, mum, sister, friend knows your wants and will assert them for you if you can't or remind you of them if you falter.

- my baby was back to back and this was the major problem with my birth (make sure you move about a lot within the last 6-8wks as that can prevent it) I got to 9.8cm and they got him turned twice but he kept moving back, this was 2 days in from point of induction and I was knackered so had emergency caesarean (I was quite grateful for it), my womb tore right down the middle so I will likely have to have caesarean again if have another - again this was nothing to do with endo history - the baby was quite far engaged at the point where they had to call it a day so that's why it happened.

So, yes you are right to ensure your concerns are acknowledged and the information is understood by the obstetrician, but having been through the experience of worrying about endo the entire way through pregnancy and then subsequent birth - I wish I hadn't been so preoccupied worrying about it. Birth (for me at least) was an entirely different kettle of fish and with hindsight I should have been reading up more around inductions, caesareans, other birth complications (to prepare myself in the event) and been more focused on the baby than endo stats, scar tissue and all that.

Definitely it's something that matters and I know endo becomes such a big part of life it's hard to not worry, but don't let it crowd out the bigger picture, there's a lot of other things that could happen and such a wide variation in birth experiences - Any of my friends who were advised to go midwife led it went very well so if you've been advised to do the same that is a good sign. Ultimately the control for what happens is up to you so make sure your voice is heard. And no matter what happens, you are going to have a gorgeous little baby here soon and that will wipe away your worries and anything that happens during the birth.

Good luck with everything.