I found this wonderful forum a few weeks before having a hysterectomy. I was given wonderful advise and questions to ask. I was concerned that I hadn't had a laparoscomy to confirm!
At the time my very confident gynaecologist put my mind at ease and assured me that having a hysterectomy was the answer to all my problems.
In sept I had a total abdominal hysterectomy. Womb and cervix gone. Ovaries left in site
I had adhesions to my bladder which he "cleared". The histology report showed endo cells inside the womb.
I wasn't even given a post op appointment.
Well surprise. I am still in agony. I have now taken control. I have seen a consultant off the list supplied on here.
Today I had my first diagnostic laparoscomy. I have many adhesions. So my next step is a joint appointment with him and a bowel specialist.
My symptoms are worse now than before. I have bowel pain and lots of fibrous blood like cotton wool stools. I am having days off work nearly every month. This is not like me at all. I am angry that consultants that specialise in gynaecology have so little knowledge in endometriosis. I am so grateful to now have a specialist. This is all thanks to the list on here.
This time I want to do it right. Can I ask advice what questions to ask?
Written by
nickynarnar
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I am sorry that you are struggling in this way and your recent experience has not been a positive one. I can but offer you some information and some useful links that may help you along the way.
You stated that you found an endometriosis specialist through the endometriosis Health Unlocked forum which is great news The following site offers lists of specialist endometriosis centres made up of teams of gynaecologists, urologists, pain management specialists, endometriosis specialist nurses and colorectal surgeons across the country. I attached the link in case you needed access to other contact details of the centre in question:
Ahead of a consultation with your endometriosis specialist, you may find it helpful to complete and bring along with you a pain and symptoms diary and consultation questionnaire. These will help both you and your specialist:
As far as pain management is concerned you may find the following of use. From page 8 onwards of the treatment information pack offers pain relief options. I have also added a few other external links:-
Did they leave your ovaries behind? Ovaries still produce estrogen and that is what makes endometriosis grow. But you are probably much too young to take out ovaries. I really hope you will find real help now. We are all here to support you from distance on your road to recovery.
Hi hun, I totally agree with Lindle. This is exactly what happened to me. After years of suffering and then doing my own research I knew that it was endometriosis I was suffering with. Iwas never offered a laparoscopy and basically told the general gynaecologist this. I ended up having a subtotal hysterectomy 2 years ago, just taking my uterus. After this I was in pain daily which would get worse around the time of ovulation and when my period would've been, I also had mini bleeds. Like you I was never offered a follow up appointment either. In the end I went back to my GP who referred me to gynaecologist again. The first appointment available came under a different trust. They were absolutely fantastic and referred me over to Stepping Hill endometriosis centre. I had an MRI which showed the extent of the damage and the fact that I had a huge nodule on my cervix. I am now 6 weeks post op from complete excision and removal of ovaries, tubes and cervix. The pain that I was suffering before has completely gone and I am still under the specialist's, I have to have my case reviewed at MDT again as I had severe adhesions on my bowel and bladder and I'm also being seen by the urology team too to to have surgery for my bladder. I can't stress enough to get seen by a BSGE specialist centre as its just unbelievable the difference in knowledge and understanding from that of general gynae. Good luck hope all work's out well for you. Xxx
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Surgery - Adhesion removal for pain & bowel issues post hysterectomy?
Colonoscopy next week
Possible bowel endo?
Hysterectomy or not for Endometriosis?
Bowel prep for hysterectomy 
