MRI scan booked for 10th July as my uterus is stuck to my bowel!

[wendymac]

Nothing is straight forward! My consultant has arranged for me to have an MRI scan as he needs to see my womb as it's stuck to my bowel. I've opted to have a hysterectomy because of this terrible condition called endometriosis.

He said the worse case scenario is possibly a colostomy which hopefully will be reversed. I'm due to go back to my consultant on the 7th August for the results of the MRI scan and then I will be booked in for my op. I will be having a total hysterectomy. I must admit my consultant is very good and he has assured me that they have the best team at Burnley General Hospital and will only perform the operation when all the team is available. I will keep you posted. xx

[wobblytulip]

I had a laparoscopy surgery 2 weeks ago and my surgeon discovered that my uterus is also stuck to my bowel. However, my consultant will do another laparoscopy in 3 months time to separate them. Yes, there is a small risk of a colostomy bag if my colon gets perforated, but it should go well. I don't have to have a hysterectomy despite having Stage 4 endo, which is great as i would still like to try for a family in the future. I'm being treated with a mixture or surgery, mirena coil and prostap injections for 6 months. Obviously it depends on whether you still want a family or not, but a hysterectomy is a very final option. It may be worth exploring your treatment options further with your consultant.

[Simy]

Hi WendyMac - jus 2 say, I have stage 4 Endo & many years ago, following years of excruciating monthly pain, esp whenever I opened my bowels whilst on my period, I was told that not only were my bowels stuck to my womb, my bowels were covered in Endo growths! 2 cut a long story v short, I was told I needed major surgery & that there was a real chance I would end up with a colostomy bag. After my shock-horror reaction, my consultant assured me that she would try to avoid giving me the bag, which she managed to do initially, but unfortunately, a few weeks after my operation, the bowels ruptured, so I had to go in for another operation & was given an ileostomy bag! The good news?? I was told it was reversible & that kept me going throughout the period [8 months in total] that I had the bag. Life was tough as u can imagine, but, I came through it & now I'd say, aside from the usual monthly pain which I manage with painkillers, I'm pretty much back to normal. So do take courage, these r big decisions that u r grappling with & my heart goes out 2 u - obviously only u can decide whether a radical op like a hysterectomy is right 4 u in terms of ur long term future plans, but either way u MUST stay positive & focused throughout & u will be jus fine. Good luck m'dear x

[wendymac]

Thanks to you both for your comments I know I have to stay positive and I will try my best. It must have been very hard for you Simy. I will keep you posted xx

[rainey6373]

Ladies, I hope you are all ok, as you can be, I cannot believe I am seeing this post, 2 days before my appointment to see another gynae!

I was informed by my gynae (in Scarborough), who was meant to perform a hysterectomy on me last October (after being in theatre for 3 hours) that she could only remove a 12cm cyst and the ovary it was adhered to, due to the fact that my uterus was stuck to my bowel & bladder, and the endometriosis was also present in the pouch of douglas. I was absolutely deflated afterwards. I was put on Prostap 3 for 6 months, and discharged from outpatients with the advice of 'go on the pill non stop when the jabs run out'.

I have now plucked up the courage to go to another hospital for a second opinion, as I feel they could not be bothered as I was 38 when I had the operation, and was classed as 'young' for a hysterectomy.

I shall see what another consultant advises on Wednesday!

[wendymac]

Please let us know how you get on Rainey. I've been quite lucky with my Consultants so far. I feel I'm left with no alternative but to have an hysterectomy. I'm currently taking norethiserone tablets which stop the bleeding and that's it. My consultant has told me that he doesn't want me taking zoladex as this hardens the cells etc and can make the operation harder to do. I've got a fibroid the size of a grapefruit which is causing me pain, endometriosis and a cyst. Get a second opinion, don't be fobbed off. It's your body

[rainey6373]

Apparently I have what they call a 'frozen pelvis' due to endometriosis. Nobody is really willing to operate due to the risk of me ending up with a colostomy bag, of whoch could be irreversible :(. I have been offered depot injection, after 2 years I will have a bone density scan, the mirena coil, or the pill. The choice is mine, but out of my hands as the endo is so bad. x

[rainey6373]

Had all these pains, and since seeing a different doc/consulatant today have been told I have frozen pelvis. I had an attempted hysterectomy last year but to no avail. Now apparantley due to the amount of endo present. They removed a 12cm cyst and it's ovary but not the other as the ovary is burried! I have been offered drugs, including the depot and mirena coil. I have started on Norethisterone already after the Prostapt is about to run out! Does anybody have any good Pro's & Con's? I am 39, do not intend to have any more children, and never want to see a period again, as I know what endo can do x

[wendymac]

I'm due to have an MRI scan next Tuesday to see how severe my womb is attached to my bowel. Then I'm going back to my consultant on the 7th August to discuss the results of the MRI scan and the next step. One of my ovaries is missing (sounds like a film title!) it looks like it's buried under a fibroid too. I don't know what to advise I may not even be able to have a hysterectomy it depends on the scan I suppose. I could end up with a colostomy bag. I'm unsure what a frozen pelvis is. Does this cause pain when walking? I have a large fibroid the size of a grapefruit and that gives me lots of pain. Your consultant wont let you stay on those types of drugs indefinitely as it cannot be good for your body. Endo is a horrid disease and more research should be done. I hope things get sorted for you keep in touch. xx