Adonomyodis and endometriosis on bowel and bladder and pouch of douglous

Hi all my name is donna I'm 38 I have endometriosis on my womb bowel , bladder cervix and rectum which I'm told is pouch of ddouglous. I'm fed up of different pain killers injections to keep my body in menopause .

I have an appointment on Thursday to see specialist at a endo centre to talk me through surgery options it went before hospital board 2 weeks ago . I'm nervous and scared of the surgery and what it might bring. has anyone else had hysterectomy and bowel and bladder surgery and rectum ? any advice regarding surgery or questions to ask just scared myself looking on Google .

Thank you xxxx

12 Replies

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  • Hi Donna

    My situation sounds similar to yours. I have had several surgeries from minor laporoscoy to major laporotomy that included bowel, etc. Each time combined with meds they have preserved my fertility and solved pain for a few years. I am now at point of considering total hysterectomy but worried about going into menopause as also suffering with anxiety. I can't offer any advice but wanted to say I can relate to how you must be feeling, hope all goes well for you xxx

  • Hi,

    My situation was very similar to yours. I was eventually referred to a BSGE centre which has been a life saver as they actually know what they are talking about and how to treat it properly. I'm now 7 weeks post op from having radical excision of endometriosis and a hysterectomy and feel like a new woman. The minute I woke up from surgery I could tell all the pain had gone. It's definitely the best decision I've ever made and I've got my life back😀 xx

  • I'm about to go for an appointment about this - this afternoon. Hoping for the same outcome as I've had enough!!

  • I was reading your post. I am undergoing diagnosis, ultrasound tomorrow, follow up on 25th then seeing gyno. I have been charting for two years, and I know with every fiber in my being that it is endo.

    I am basically preparing myself for a total hysterectomy. my husband and I have two boys and have been done with babies for a while, I'm 37 years old. my fear with the hysterectomy is the sudden change. can you share your after procedure with me?

  • My journey has been more complicated since my last post. I also had adenomyosis which the only cure is a hysterectomy so that's been cured. I kept my ovaries during my hysterectomy but continued to follow a cycle and suffered terrible with PMS symptoms and cystic acne. I also started to get pain in my left side. I had an MRI and my previously healthy ovaries had developed cysts and endo. I was back in surgery at 16 wks post op to have my ovaries removed, during the operation new widespread endo had regrown throughtout my pelvic wall. So it all had to be excised again, I was stunned that so much has regrown so quickly. I have alway known that a hysterectomy isn't a cure for endometriosis but a cure for the adenomyosis so endo can return, but wasn't expecting so much so soon. Having my ovaries removed has hopefully reduced the risk of endo returning but due to my age I have to have HRT which is oestrogen. My consultant is monitoring my levels to make sure it's a good balance and said that my ovaries were producing far more oestrogen than HRT will provide so fingers crossed endo will stay away for a good while. It's been 7 wks since my ovaries have been removed and I'm not going to lie it hasn't been easy. I think my body has just had enough from all the operations and I got shingles a couple of weeks ago. I was put on HRT patches straight away but still suffered with menopausal symptoms, the dose was then doubled but no effects. A blood test last week showed that my oestrogen levels were extremely low so it looks like I'm not absorbing oestrogen through the skin. I've been switched to tablets so hopefully I'll start to see an improvement in symptoms soon. I'm confident once the HRT is right then I'll start to pick up. Good luck with your appointment and keep pushing for answers. I had severe stage 4 deep infiltrating endo everywhere as well as adenomyosis and it never showed up on any ultrasound I had, you know your body so if nothing shows on the ultrasound keep pushing for answers xx

  • I had hyster and ovaries removed in feb2015 but not the bowel surgery. Mine wasn't done at bsge centre so in worse pain now awaiting proper excision with bsge surgeon.

    Head over to the hysterectomy associations website as loads of helpful advice there and people to talk to to help make decision and then recover if you go ahead.

    If it's done by bsge surgeon in a centre I'd say go for it as you should feel so much better and get your life back but appreciate it's a really hard decision to make. Good luck.

  • I had surgery on all the places you mentioned except no hysterectomy. I definitely feel much better for it. I didn't really worry too much before hand as I believe the surgeon can deliver. Since you are treated at a BSGE centre you should see improvement afterwards.

    Take someone with you for the consultation and bring a list of questions with you. Good luck.

  • I would just be sure that they are going to excise ( cut away ) and of the endo and have found it all. Ive had a hysterectomy its early days but right no wish id stayed on the gonadatrophin agonist injections. I got consultant to agree to 2 years and I was almost cured. However they decided to withdraw them after a recent lap as found no endo ( gynecologically ) I doubt they checked my bowel ( as ive now found out usually it isn't checked only appendix as its in the area they look. ) If your ok on the hrt and the injections id think about staying where you are. I know its great to think it might be a complete cure and for some it is - but id ask first . Only 2 places id consider such surgery and id definatly make sure yours is a bsg endo centre. Alternatively you might be ok and I am just unlucky. Ive had a hell of a time convincing my consultant and gp I have pain that now responds to my HRT ( daily rather than a few days a month ) 8 weeks off work and triggering all kinds of nasty proceadures that will ultimately dismiss me. I don't want to make you scared but ask about incision not thermal removal / laser etc - good luck let us know how you get on if you can - hugs xxx

  • Hi Donna ,your story sounds familiar !!! . I totally get where you are at . At 40 I was admitted for a planned hysterectomy ,I had exhausted all options with pain relief & hormones.Bowel ,bladder & sciatic nerve all effected. Not wanting any more babies I agreed this was the way to go.Sadly my Consultant was unable to give me hysterectomy without damaging my bowel,I would require a stoma.He was also concerned as the area was very vascular. I lost my job this year,due to this illness (25 years as a mental health Nurse).I'm still not in a great place with it all &I am trying more alternative therapies try to keep me positive. Make sure you have a list of questions & concerns.Be confident & write things down .Make sure you are happy with all possible out comes of surgery.These specialist surgeons are amazing & will do all they can.Please bare in mind a hysterectomy will not take the endometriosis away but certainly help.Happy to chat more if it helps X

  • Hi

    I had a full hysterectomy done three months ago. Endo had wrapped its rotten fingers around everything it could find. My kidneys, bladder and urethra had to be dissected out of massive endometriomas. My pouch of douglous was full of the rotten stuff. Had a brilliant surgeon who spent hours and hours "ungluing" my insides before being able to start removing anything. Had ovaries, tubes, uterus and cervix taken. It was even inside my cervix.

    Three months on I am feeling human again. Pain basically gone except if I over do it physically. I haven't needed pain killers in ages. Now looking forward to getting fit and active again. (Broke my ankle a month before my hysterectomy and ended up with a DVT). Haven't needed any HRT either which has been a blessing. Think my ovaries were so damaged they'd stopped working long ago.

    So glad I made the decision to have it done. Been life changing... not to mention sex is pain free too!!!!

    Good luck with your journey.

  • Hi! I had severe endometriosis for years. I had a total of 10 laparoscopies and laparotomies before giving into my doctor and having a hysterectomy. I dragged my feet kicking and screaming the whole way because I had so much fear of the changes this would make to my body. I had a total hysterectomy but my cervix was left due to it being adhered to my bladder. I do still have adhesions on my bowels and bladder with little residual problems but I have no regrets about having it done. It is now like 12 years later and I rarely think about it when before it consumed my every day. Best of luck to you.

  • hi my name is cassy im 27 years old now but was 21 when i got endo in my womb bladder and bowels and im awaiting an operation to remove what they can. i know that the op looks scary online believe me i have done same but you are asleep through out it all and scaring is so small you can hardly see you will be in pain for 6 weeks but that will be just your insides mending i hope everything goes well x

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