Help please: I don’t have Endo, but was... - Endometriosis UK

Endometriosis UK

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Help please

Enidx profile image
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I don’t have Endo, but was diagnosed with a frozen pelvis a few years ago whilst undergoing surgery for what they thought was a cyst but turned out to be a huge abscess which had been undiagnosed for 18 months despite visits to the drs who just kept telling me it was thrush - the abscess was draining through my vagina. Surgeon seemed to think that it was caused by having a copper coil in situ.

Previous to that I had 2 c sections.

To cut a long story short, my abdomen is a mess, pain, back ache, kidney ache, leg ache, constant fatigue, moodiness, anxiety, IBS type symptoms, constipation, either not getting the feeling to wee or wanting to go every 5 mins.

Are these all typical of having a frozen pelvis ?

My sex Drive has taken a nose dive and at this stage, I could actually live without ever having sex again.

The surgeon said that any further surgery would result in ICU admission and to be honest I would rather manage the situation if I can without this.

I work full time and nobody at work knows about my condition, some days I really struggle to go in.

Has anyone successfully claimed PIP for thier symptoms as I not sure how much longer I can manage full time work.

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Tillyfloss profile image
Tillyfloss

hi. Hope you're having as comfortable day as possible.

I'm afraid I don't know anything about pip but I'm sure someone will come along with information on it.

I did however have a full frozen pelvis and all the symptoms you mentioned I suffered with daily. I also had cysts and stage 4 endometriosis so it's difficult to say what was causing which symptoms. Have you seen a general gynecologist? My first surgeon told me id have to have everything out but the bsge specialist did a great job, it took him * hours and he couldn't treat it all but I'm so much comfy in my own skin.

what medication do you take? Its definitely worth getting a referral to the local pain team they got me through the day by re organizing my meds.

you do brilliantly going to work with no one knowing but I hope you have support from family and friends to.

xx

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