Was excision surgery worth it?

[Hopeful112]

Did excision surgery help you long term?

[Endofitall]

I can’t really comment long term, I’m coming up to 4 months post op. But so far yes definitely.

1. Just for the validation after years of doubting doctors etc to have a clear diagnosis.

2. The symptom relief. Together with pelvic floor physio post op. I feel finally I have a chance to get my life back.

3. We conceived naturally soon after the excision after years of infertility.

I hope you can reach a good decision for you.

I was so nervous about it and unsure beforehand.

[Hopeful112 in reply to Endofitall]

So happy to hear you are doing well. Really pleased to read a positive response. Congratulations on your pregnancy.Wishing you lots of good health and happiness ahead 🌹

[Endofitall in reply to Hopeful112]

Thank you. I have to admit the pregnancy hasn’t ended well but I don’t think that’s anything to do with the excision and all our specialists still very positive we conceived naturally so soon, following multiple failed IVF rounds.

As someone else has said you do have to go in eyes open that it’s not a cure but it certainly can help. I was lucky to have surgery with a top BSGE advanced laparoscopist who could deal with all the severe rectovaginal as well as my ovarian disease in one go. I would definitely advise ensuring the person who does it is very experienced and have as much assurance as possible things will be sorted in one procedure (obviously they can never know until they go in but you don’t want a general gynae who wouldn’t even touch the deeper stuff/anything on bowel etc)

[ForABabyPanda in reply to Endofitall]

Did you get pelvic floor physio on the nhs? I was never offered this but I think I could do with it.

[Endofitall in reply to ForABabyPanda]

Sadly not offered or suggested it either. Something I had to find for myself. I did ask GP but waiting list was huge and the physio apparently didn’t do manual work just a leaflet and telephone call type physio and pushing Kegel’s (which make endo related pain worse) so I went private and found a lady specialising in endo who did hands on work and it’s been amazing. I started 6 weeks post op. It cost me £90 for initial assessment (which was 1.5 hr examining me front and back) and then £30-45 for follow up which I needed 4-5 sessions. I know that’s a lot of money but it has been really beneficial for me. After this I can just go back when I need to. She gave me exercises to do at home including internal work to release trigger points with a pelvic wand and external stretches to relax the pelvic floor muscles.

[KittyTherapy in reply to Endofitall]

Can I ask please - how do you know if pelvic physio would be of benefit? Not really something I'd considered before and would be interested to know more

[Endofitall in reply to KittyTherapy]

I must admit after doing lots of research about it, and listening to talks by international specialist in endo, my feeling is everyone who has endo should have access to pelvic floor physio. It’s sad the NHS doesn’t invest more in hands on physio for us. It would hugely improve quality of life pre and post op plus mean fewer people becoming dependent on strong painkillers.

I think if you have any chronic pelvic pain, any pain with sex, any urine or bowel symptoms, then it’s worth trying it but you do need someone good and who’ll do proper manual work and understand endo and chronic pelvic pain issues.

As an example with bowel symptoms even post op (which had improved things a lot itself) I was waking in the night needing to go and finding it difficult to empty so always felt I needed to go and uncomfortable. Once I’d been I’d have pain often stabbing type up rectum and vaginally for a good few hours so really affected my sleep. Following the physio I don’t wake in the night now and it’s first time in ages I’m not constantly aware of my rectum and vagina being painful or “full”, and finally feel when I go to the loo I’ve emptied properly

Pain with sex took the longest to sort out but work in progress and so much more we can do now.

Hope that helps

[KittyTherapy in reply to Endofitall]

Thank you for your reply. I am just 1 week post lap surgery so potentially something to look into once I'm more healed. I my endo is quite advanced and affecting the bowel. Sex is painful and can relate with the bottom shooting pains! I call it lightning butt 😆. How did you locate your physio? Any tips on where to look?

[Hidden]

I had excision with a hysterectomy/oophorectomy about 7 years ago. I had widespread disease (uterosacral ligament, bladder, ureter, pelvic sidewall, kissing ovaries, obliterated POD etc etc).

I'm now in my mid 40's and it has come back, possibly because the surgeon who did it was too conservative with the rectal shave and left some behind, so I've got two RV nodules, one of which is DIE. At the moment I'm managing it with hormones/pain killers (I've had v good private care) because another excision surgery would be very risky so we're trying to delay as long as possible.

However I am still not nearly as ill as I was, so for me it was the right choice, but it isn't a magic wand and I think it's important to be aware that it may not be the end of the road. Some women do get long term relief from it, but not all.

[Hopeful112]

Thank Hidden for your response. I have ligament involvement, obliterated pod and few more areas. Probably see more issues once they look inside. Just trying to push myself and have surgery I'm so scared. Suffered since it all began at age 11 and I'm now 35. Such a horrid disease.

[Rasmol]

I had excision surgery 7 months ago and my experience was very positive. I used to have pain every day and now just when I’m on my period. It gave me my life back. I also changed my diet to anti inflammatory and stop eating gluten which also helped massively in my case.

My advice would be to find a highly experienced surgeon dealing with endo cases on a daily bases.

Wishing all the best with you endo journey

[Jcwy]

I have had 2 surgeries so far the last one being in 2017, no for me it did not help. I’m going back to dr to see what can be done again , I’m in worse pain the. Ever

[Chel91 in reply to Jcwy]

Hi, have you ever checked out Nancy's Nook FB Group to look for surgeon recommendations? I'd highly recommend it for future treatment x

[Chel91]

I don't have super long term results, but for me it was worth it so far. I had zero period pain after mine, then got pregnant after 2 periods. I'm still on the breastfeeding journey so haven't had anymore periods, but I've no pain so far. Even if the pain returns at some point I think it will have been very worth it. My surgeon was very experienced and skilled. Also suffered since about age 11 (first period to age 30). The surgery was also minimally disruptive to my life, I would get a second surgery in a heartbeat.

Are you seeing an endo specialist? I think it can make all the difference. Good luck x

[Hopeful112 in reply to Chel91]

Hi Chel91. Thank you for responding to my post. Congratulations on your baby 🌹I have just had a consultation with an endo specialist in Surrey. He also works in London in Chelsea. If you don't mind can I send you a dm about your surgeon? I am still looking into finding the best excision specialist. I cannot afford another surgery after this one so will be my one and only shot privately.

[Chel91 in reply to Hopeful112]

Sure. I found mine on the Nancy's Nook FB group "international surgeon list" in their files, they have about 7 private UK surgeons on the list. Plus European options. I'd also try and get personal reviews and feedback for that particular surgeon. I know there are 2 or 3 in UK that loads of ladies have used on there and other groups. Xx

[Hopeful112 in reply to Chel91]

I have sent you a Dm x

[Jcwy in reply to Chel91]

Yes, I remember when I was breastfeeding each of my babies that I had absolutely no cramps or pain at all. It was amazing