Endo specialist referral wait

[jade_1402]

Hi Ladies,

Following a lap last week i was diagnosed with 'severe' endo in a number of places, they removed as much as possible but i have been told it is most severe near by bowel and she didn't have the expertise to remove that without doing any damage, and has referred me to an endo specialist. I was told before hand there was 'probably nothing wrong' with me, and now i have had an endo diagnosis with a referral to a fertility clinic. Im massively struggling to get my head round it.

I was wondering if anyone had experienced something similar? and also how long any of you ladies have had to wait to be referred to a specialist?

Sorry bit of a rant!

Jade x

[SEB88]

Hi Jade. No need to apologise for the rant, it is a lot to get your head round.

I have stage 4 endo with bowel involvement, only my gen gynea had no endo knowledge and didnt recognise the advanced adhesions, so the fact yours has recognised it and referred you is good news.

I am now at a bsge center, so when your gntea says specialist please make sure it is a hospital and dr on this list. My bsge dr has sent me for ivf and i have surgery in 12 days for pain management and ti improve ivf chances.

The way i was referred was by gp to the gynea department of the bsge center for an ultrasound scan, these guys can identify endo really well. Then i got internally referred to the endo clinic and i wont lie it was a lonf wait at same points 17 weeks between appts but please dont let this put you off, i am now getting the correct treatment by the right people which is very important.

I wish you luck and pm me if you did want to talk more x

[jade_1402 in reply to SEB88]

Hi, Thanks so much for coming back to me! Sure il get there but i do wish they were a little quicker!

Really hope your surgery helps with your pain and IVF

Jade x

[Hidden]

I had a very similar experience - told by the GP for months that it was IBS and perimenopause as my pain and symptoms got worse and worse (I'd always had bad periods, right from the first one at 13, but when I was 36-37 things started to get really bad and I also developed new bowel symptoms - chronic constipation, and passing lots of mucus and blood).

I was then finally referred to a gynae by a different GP after having abdominal pain that was so bad my husband called an ambulance. A&E ruled out appendicitis and said they thought it was gynaecological - it still took several months of faffing around but I was eventually referred. That gynae said he would do a lap, laser out the endo and put in a mirena to stop my periods and I would be fine. I came round from the anaesthetic to be told that I had severe and extensive disease and he hadn't treated any of it and that I needed a hysterectomy. I was then referred on to a bsge centre. It was a long wait, unfortunately - I was originally referred in May, but didn't see a consultant until August, and I only got that appointment because I rang them constantly. I was on decapeptyl at the time which wasn't working, I was bleeding and in terrible pain, and the original gynae had effectively washed his hands of me. I waited 16 weeks for my first lap with them, where they fully mapped my disease and drained the cysts on my ovaries. I then waited 18 weeks for my second surgery which was extensive excision plus hysterectomy and oophorectomy. I had disease on my bladder, bowel, pelvic sidewall and ureter, hydrosalpinx in my fallopian tubes, ovaries stuck to the back of my uterus, adenomyosis. According to the bsge consultant given how widespread it was, and the size of the lesions, I'd had it for years, probably since the age of 13.

I have found it incredibly hard to get my head round the fact that my entire life, when I thought I was just a bit rubbish compared to other people, I was actually ill. I've also really struggled to come to terms with how badly the medical profession has let me down - all the years of going to the GP with period problems (from the age of 15) only to be given mefenamic acid, or tranexamic acid, or buscopan, and told it was normal and some women just have bad periods. No-one ever even mentioned endo, and when I asked about it, I was told I didn't have the symptoms. I haven't been able to work in 13 years. At the end of the day, it is what it is and I can't change it, and the bsge centre have really helped me, but I think that it's normal to grieve after any sort of diagnosis like this. It does get better and you will find ways to cope with it all, but it is normal to feel angry and sad. x.

[jade_1402 in reply to Hidden]

Hi, thanks for coming back to me! I could not agree more in that feeling about being let down by a number of medical professionals. I am glad the bsge has managed to help you iv never heard of that before now so i will research that - thank you

Jade x

[SG82]

Hi

I was also ignored by GPs for my painful periods and prescribed strong pain killers. After 11 years of suffering I have been diagnosed with stage III endometriosis and have just had excision from my bowel, ovary, pelvis and womb.

Could you tell me if you had bowel symptoms when not on your period? I have had uncontrollable gas when I eat and a complete change in my bowel habits in the past 2 years so I'm hoping they will Be gone once I recover.