Retrovaginal endometriosis

[Alpa]

Hey guys I've just been diagnosed with retrovaginal endo. Not sure if anyone else has and would like me to share my experience of excision surgery etc x

[Welsh-barney-boy]

Hi. I was eventually diagnosed with rectovaginal endo after 2 surgeries with non specialist. Pain was horrific. Surgery (v long) helped hugely. Hope you're doing ok.

[NatAbad]

Hi Alpa, I have same as you. I went to see a colorectal surgeon before my main surgery and had a sigmoidoscopy before laparascopy. I had endo across my bowel wall which was sticking to other organs. One thing I did find was that changing my diet really helped. Lots fish and veg etc. I also exercise to help. Any questions just let me know. I realise how alarming it can all sound. Natalie x

[Naomi1002]

I think a lady called Lindle put some information on this website.

Good luck!

[Charlie-36]

Hi Alpa, I have have had one Lap to remove left endometriomia cyst in may last year( with general gyne) have had continued pain really bad in last year so unable to work I saw a endo specialist couple months ago who thinks I mite have rectovaginal endo so am awaiting MRI and then will have another Lap. I have found my bowel symptoms have improved with taking laxado every day, can I ask what your symptoms were? I dont have rectal pain which i know can be a symptom guess im just anxious to know whats wrong All my pain is on left side top of thigh groin hip and ovary area just had 3 month course of zoladex it actually made my pain worse! I hope your not feeling too bad after your surgery sending you well wishes.xxx

[Alpa in reply to Charlie-36]

My symptoms were constipation mainly. Pain on the first day at f my period. Heavy periods lasting seven days. My legs tended to feel numb. Back pain. I never realised I had this until my op. I thought I had cysts. The sigmoid part of my bowel was stuck. I think I will feel much better than once recovered but let see.

[Charlie-36 in reply to Alpa]

Thanks for your reply Alpa I have really struggled with constipation for balong time, in my last lap the surgern said my bowel was in such a mess and very dialated with evidence of constipation but I never connected the 2, I do hope you have a good recovery and have relief of your previous pain.x

[Meganwilkinson]

Hi ladies

I am currently off work following my surgery for rectovaginal endometriosis. I was rather naive and had never heard of endo before. Last Nov I was admitted to hospital via ambulance with excruciating abdominal pain and they initially thought it was kidney stones. After a CT scan it was confirmed I had cysts on my ovaries and they suspected one had burst which was causing my pain. I had surgery with a general gynae and the cysts were removed and I was told I had endo and they lazered the majority of it. Had a follow up appointment after the op and was told they didn't need to see me again.

Once I had recovered from the laparotomy (cysts were too big for key hole) I still had pain in my hips and my back which was unbearable. The pains shot down my legs and often walking was painful. I went to the doctors who gave me tramadol but that made me groggy and sometimes didn't touch the pain. I decided to see a specialist endo consultant privately just for his opinion. He suspected RV endo and after MRI scan confirmed it. He gave me the prostap injection which did help with the pain but not the pain in my back. He suspected this was because the endo has infiltrated so deeply that it was in my nerves.

Anyway I had surgery 4 weeks ago where he found endo on my bowel, bladder, ovaries (my ovaries were stuck together) Pouch of Douglas and pelvis. He said my pelvis was frozen due to the adhesions. The good news is he has removed it all and I am awaiting the prostap injection to wear off to see if I am pain free.

It is not an easy thing to go through but things definitely get better. Don't give up girls but most definitely get an experienced consultant - a general gynae cannot handle this condition and in my experience did not nothing to help me. Xx

[Hidden]

Morning - really just to say thanks for this exchange, which I've found really useful. I know from an MRI a couple of years ago I have endo adhering to my bowel and I often feel like I am utterly glued together in the pelvic region though the intensity/inconvenience of this comes and goes. At the moment I am suffering with backache, throbbing in pouch of Douglas, pain down my legs etc. Because of a negative experience with surgery in the past I have been taking a 'can I get to my menopause before it gets so severe I have to have an operation' approach - I am 44. I wonder if this is a little naive - views welcome! - but this has given me a kick to get back on the food and exercise wagon, having lapsed somewhat (well entirely!!). I was also having some physio on my pelvis which was helping to relax the muscles down into my legs which were incredibly tight - whether due to reaction to the endo further up or just like that anyway I am not sure...again I have lapsed so I think I may pursue that, despite the cost, again.