Endo on bowel and in vagina- surgery

Hi

I am new to this site but just about at my wits end. I was diagnosed with endo last year after 12 years of being told I was normal and had IBS. I have been told my endo has stuck my bowel to my cerix and also has grown through into my vagina. For years doctors kept wondering what the lumps were when I had a smear and finally I have an answer! Anyway I have opted for surgery in a few months and I am terrified. I can no longer take the combined pill which helped sypmtoms most of my teens and early 20s as I have developed migranes with them. The progesterone only pill made my moods so bad I was always crying. The mirena coil, fitted at time of surgery last year was agony! It did help the pains but it caused so much pain in my vagina I couldn't even sit down. I kept saying it was like the threads were digging into the walls. I had a colposcopy and I was so red and inflammed the doc couldn't even get the camera through my cervix due to the agonising pain so he removed the mirena coil.

I am now seeing a specialist gynae in endo. He wants to operate and basically slice my endo away and also cut out the disc of it from my vagina and stitch this up. I have to have 2 surgeons in theatre, a bowel specialist incase the endo is so deep I need a bowel resection. The problem is the surgeons are basically going in blind. They don't know till they start how much they need to cut away and this scares me. All I know is I can't cope with this pain! I used to have a week or 2 a month relatively pain free but now I am just in pain all the time. Across my lower back, my bum, down my legs, along my pubic bone at front etc. Every bowel movement hurts. Even peeing causes pains during my period. I am constantly bloated. I have put on over a stone since my surgery and mirena fitting last summer which is getting me down. I still get headaches and I now have problems with exteme fatigue. My GP has put it down to chronic fatigue caused by my endo and I keep getting really cold hands/ fingers and tingling in them.

I am sorry to go on. I know we are all in pain. I just needed a bit of a rant! I am just really scared about this surgery. Has anyone had it?

Thanks ladies

7 Replies

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  • I haven't had the exact same as you but please don't worry too much. With nearly all endo excision surgery they go in blind so don't worry about that. On the plus side they are having a bowel surgeon on stand-by which is normally the problem!

    Im the same as you regarding the contraception thing, except the mirena. The only thing I have found good was the depo provera every 8 or 10 weeks. I still bled a lot on it, but having it earlier than it was due reduced bleeding to 4 weeks and pain reduced massively. The other option, more short term, is stuff like prostap or zolodex, but this can only be used for a short time.

    I know it's hard honey, but it sounds like you have a goo consultant and it's nice to finally have answers isn't it - eventhough it's not always good news, it's better to know.

    As you have bowel involvement have a look at the endo diet, it's really well rated and some women have said it's the only thing that helps.

    Good luck with your surgery honey, and make sure you have several weeks off work at least, and no heavy work including hoovering for 6-8 weeks: told my husband I couldn't Hoover for 6 months :D

    Xxx

  • Dito I'm where you are at the mo going in for bowel surgery bladder surgeeyand full hysterectomy in 12 wks all for bloody endo grrrr x

  • Whoa thats more than me! I'm 27 so no hysterectomy yet. Doc said it wouldn't help my pain even if I did. Wishing you all the best. My surgery is in about 13 weeks time. x

  • Hi. This sounds very similar to my situation and I empathise with you :( it's very hard and people (including doctors) don't understand the pain it causes. I've not had this surgery but with regards to your other symptoms (fatigue, cold hands and tingling) endo on the bowel can prevent B12 being absorbed into your body causing Armenia. Low iron levels cause these symptoms along with other things like palpitations, confusion, dry and itchy skin etc. maybe worth getting checked? good luck with everything x

  • Hey I had endo removed from my cervix and had pain before my op. Havent tried sex or even entering anything to see if I still have pain as too scared now, I read somewhere that scar tissue and adhesions can be on ur cervix and vagina wall and cause more problems :( im hoping to find this out at my gynae app 2moro xx

  • Hello,

    I just had your surgery yesterday. Bowel shaving and vagina nodule removed.

    I had Zoladex for a few months before to try to reduce the nodule before surgery. Not enjoyable because of all the side effects, but I was pain free and the surgery went well.

    Too early to say if it will help long term, but I believe it was the best option for me.

    Good luck, whatever you decide! X

  • So sorry to hear what you are going through. I went down the IBS excuse route, and suffered for 23 years before getting diagnosed, by then like you it was stopping me from walking, pains like sciatica down my legs, and pains in inner thighs. The pins and needles responded very well to vitamin B12 supplements.

    I had two ablation ops, Zoladex and danazole, then eventually had a hysterectomy, cervix and ovaries went too. It was the best thing I ever did, others in the ward were hobbling along but I was bouncing, I was in so much less pain than I had been for years.

    Hope things get better for you soon, Cx

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