Endometriosis

[Tasha112x]

Hiya this is a long one, but please give your thoughts & experiences. I had a Laporoscopy at the beginning of July for suspected endometriosis as I have most of the symptoms, I have bleeding after sex which started 2 years ago while I wasn't on any contraception as Id finished on the injection 3/4 months before and didn't have it again as I bled the whole 3 months on it, I have pain during sex and can have it after for upto 2 days, ive always had heavy painful periods since I started them, my periods are really heavy and painful with a lot of small blood clots, i do get constipated/diaria sometimes but not a lot I usually go to toilet every day fine and not constipated, I usually get constipated or have diaria when I'm on my period. I have brown blood before/after my period. I get a pain in my lower back and down my right leg when I'm on my period & once ive finished. I have really bad pains during ovulation and I also am constantly tired but I always have low iron levels anyway due to my heavy periods. My pay period I was on for 17 days really heavy and painful with a lot of small blood clots. They when did the lap in July they didn't find endo but they did find an adhesion my left ovary was stuck to my bowel. The surgeon separated that as he said that could be what is causing my pain and he basically put the pain down to ibs & the bleeding after sex down to the injection which I wasn't on when the bleeding started as like I say it had stopped 3/4 months before the bleeding started! Anyway as I felt like I'd been fobbed off my doctor referred me privately to an endometriosis specialist & he basically said that for me to have an adhesion there's usually an underlying problem like endo or adeno. He's put me on Prostap for 3 months to stop my ovaries and see if my pain stops, then he said if I dont have the pain he will keep me on it for another 3 months but if I do have it then he will take me off it, he said he will check my pictures of what the other surgeon took during my lap incase they've missed something & he's now checked them & sent me a letter saying there was an obvious adhesion as my ovary was stuck down to my bowel but no obvious sign of endometriosis. I had the injection last Wednesday and not had any pain honesty I feel like a different woman! Does anyone think endo could be the cause even though he's checked my pictures and said no obvious sign of endo? I think once ive finished the prostap he will do another lap of I don't have the pain on this which so far I haven't, I did have pain before I had it but that pain went not kind after having the injection. Any of your experiences would be great xx

[Tboag]

Endo can be tricky to see/find, if the lap was done by a general gyne doc, I could have mist it, like the other doc said, if you have adhesions there most be an issue somewhere, and due to your symptoms, it dose sound like endo,

Good luck

Xxx

[Tasha112x]

Hiya ive just googled that and it says that's one of the most severe forms of endometriosis. Surely they would have seen that on my laporoscopy or the endometriosis specialist I'm now under would of seen it on my pictures from my laporoscopy? But he's sent a letter to me saying obvious adhesion as left ovary stuck down to bowel but no obvious sign of endometriosis. Is rectovaginal endometriosis actually endometriosis or is it Adenomyosis if you get me? Xx

[Tasha112x]

When they do the laporoscopy do general surgeons not check these areas? So my symptoms point to endometriosis anyway? I'm on prostap to stop my ovaries for 3 months at the moment then if I don't have the pain the endo specialist will put me on it for another 3 months and will most probably do a laporoscopy, with him been a endo specialist will he check these areas? Thankyou xx

[Tasha112x]

Hiya yeah he is on that list, castle hill hospital cottingham and he's called Mr phillips. I paid to see him private and he's now referred me across to his Nhs list. I was under a general gynaecologist and it was the General gynaecologist who did my laporoscopy in July. But I payed private to see Mr phillips and saw him 6th October and he checked the pics from my laporoscopy looking at the adhesion and sent me a letter saying that there was an obvious adhesion my left ovary was stuck to my bowel, but he was also looking at the pics incase they've missed anything like endometriosis but on the letter he's sent me he said no obvious endometriosis seen but to continue on with the prostap treatment he's put me on to stop my ovaries till I see him in about 3 months. If they had missed endo and it was rectovaginal endo like you say then would Mr Phillips be able to see that on my laporoscopy pics or would he need to do another laporoscopy to see it for himself? Xx

[Tasha112x]

No he only did vaginal with fingers up & pressing on my belly and he noticed the pain I had when he did it was at the front. Prostap is helping ive had a bit of pain but not nearly as bad as i usually have. Don't know wether I'm still having this bit of pain coz the injection is still kicking in as I only had it last Wednesday xx

[Tasha112x]

Hiya Lindle on the letter he's sent out and ive recieved today he's put..

Dear Natasha

I have seen your Nhs notes. These confirm that the ovaries were a little bit stuck down but other than that there was very little else to be seen and certainly no obvious endometriosis in the photographs that I have seen. I think it would be worth continuing on with this treatment. Hopefully things will settle down. I await a note from your G.P. To say that you can be seen in my NHS clinic and will organise this once we have an indication that they are happy with this plan.

So does that mean coz the general surgeon did my laporoscopy then ive seen Mr phillips who's an endo specialist and he's checked the photos from my op and there's no obvious endo there that I definitely haven't got endo even tho ive got a lot of symptoms of would Mr phillips have to do another laporoscopy to be sure? The Prostap is the treatment he wants me to continue on and it has helped settle things as I haven't had pains like I usually do so ive not had to take strong painkillers my doctors put me on to help the pain like I usually do. And what does he mean hopefully this will settle down, coz if the Prostap has stopped my pains and there is no obvious endo there on the photos then what about when I come off treatment and my ovaries etc are working again then I have the pains & bleeding after sex too! Then surly they will have to look at the next step and find what it is? Xx

[Tasha112x]

So saw the endometriosis specialist today, he said he thinks it's adenomyosis but I could also have a bit of endometriosis as I had adhesions and Adenomyosis doesn't cause adhesions. His only soloution was coz ive not had any pain to either stay on these injections for another 6 months wile I decided if I want to have another baby as that will stop my symptoms for 9 months & also these injections will stop my symptoms until I come off it & get pregnant, either that or go on the pill! He can't officially diagnose adenomyosis as the only way to actually diagnose it is through a hysterectomy! What about if I do have a bit of endometriosis and they've missed it? He doesn't want to see me again apart from if I get pregnant and have a baby and have the same symptoms after a baby he said if I do then to go back to my doctor and get referred back to him! Why did I pay privately to see him and feel so lost! I have bled after sex for 2 years and guess what it must just be normal!!!!!!

[Tasha112x in reply to Tasha112x]

I put today as that message was wrote yesterday, but it was yesterday I saw him xx