Anyone know what this pain could be?

[Tia1991]

I've had endo and had ops apparently I haven't got endo anymore I'm on the prostap 3 injection but get like a really tight feeling then a shooting pain up my vagina which then travels to my LLQ and sometimes when its really bad it goes in to my left thigh I've had scans and its all clear but I know there is something going on just don't know what. The pain is that intense I curl over and can't move my husband once recorded me to show my Dr and my Dr gave me morphine and told me the scan come back clear so nothing else he can do.

[Starry]

Did you have the pain before the prostrap? I had some pretty nasty pain in chemical menopause.

Other possibilities might be adhesions and residual nerve pain.

centerforendo.com/is-my-end...

Are you being treated in a BSGE specialist Endo centre or by a general gynaecologist? If the latter can you ask for a second opinion by a BSGE accredited Endo consultant?

[Tia1991 in reply to Starry]

I have seen a very high gynae private but after about 6 months he told me the endometriosis has gone and there is nothing more he could do for me I believe he would've been part of BSGE my dr is a gynae but must say not very good. I will have a proper read of that link you've sent me and see what else I could do thanks. Xx

[Starry in reply to Tia1991]

It's not so much a consultants seniority or BSGE membership, as endo specialisation and accreditation via the advanced specific Endo skills training and working in a dedicated multidisciplinary Endo centre check for his name at a centre.

They may well be an excellent general gynae but just not necessarily be the best placed person for your specific condition anymore as Endo is such a complex disease.

[Ugne]

Sounds like your sciatic nerve could be trapped. Yin yoga is really good to release it- it definitely helped me.

[Heloo85]

Endo doesnt just 'go'. Nor does it always show up on scans. Endo is incurable. Some people are pushed into remission after surgery! Some for life, some for years and some it just comes straight back.

My history.

Ultrasound showed PID. Drs thought i had an STI. A scrape eventually showed infection but STIs come back clear. No cysts, nothing. I had a hydrosalphinx and fluid in my bowel loops. Sent urgently to gynae as have a history of CIN 3 (cancer in situ)

Lap. Diagnosis changed from PIP to stage 4 Deep Infiltrating Endo. 5cm endometrioma. (Left side only). Including sigmoid colon. Sawn up and given Zoladex until major surgery could be organized.

Complained of kidney pain so was given an abdominal ultrasound. Showed benign tumour in liver abd cysts on both ovaries. Finished zoladex.

Got appointment at BSGE. Given pelvic ultrasound *normal* sypposedly.

Put on pill, seen colorectal guy awaiting now *intermediate surgery*

Goes into theatre. Now major surgery. DIE everywhere. Bladder, bowel, both ovaries, fallopians.

1 month later symptoms returned. Tried combi pill. Did nothing. Put on Zoladex for 4 months in May. Ultrasound last month positive for endo.

So in the past 2 years ive had everything from drastic findings to nothing. On treatment and off!

The reason they say only a Lap can confirm or disregard endo is because unless its very severe, it generally doesnt show up.

Try back through NHS and good luck.

Xx

[Tia1991]

Thank-you all for your replies. I feel like I'm complaining about nothing now compare to what you've been through I'm sorry to hear you have been through so much hope your ok now. My Dr is useless I went to change dr's but its took me 12 years to get this far and don't want to start from step one and try all the pills and different meds again I'm scared of making that move my last operation was a bikini cut op as the endo had grown in/on the tube between my kidney and bladder but thats been about 2 year ago I along with probably all you other women that are suffering just feel trapped and I don't see light at the end of the tunnel just yet. I go and see the specialist in Dec so I'm going to ask her for help and maybe a MRI scan. Do you think that might get to the problem? Xx

[Heloo85 in reply to Tia1991]

Its hard to say! It might not show up. Also, it may not be endo but adhesions which definitely not show. Just keep pushing for another lap! If not try what im doing, cut your hours at work and apply for PIP. I dont want further surgery as had complications with the last 2 and even my consultant has said he doesnt want to rush me back into theatre! So this is the best im getting. But its rubbish that because youve had 1 lap, youre now endo free. You might be but definitely not guarenteed. Im lucky, im under a BSGE surgeon who took one look at me and said "its back aint it". He originally didnt believe me until after he opened me up, now he knows i was far from lying about how bad i was feeling. The NHS is a pain but if you can push for a BSGE specialist, they will look after you! I see my consultant every couple of months and have for a year so far, 8 of which post surgery. So ive definitely not had "oh right ive cured you, youre fine now" that some people get! Xx

[Tia1991]

Do you need to be reffered by your gp to a BSGE specialist? As that sounds promising. Also I was thinking about pip but there is a post that I read on here and the woman couldn't work and no one would employ her coz of her illness and so she went to get dla/pip and she got refused it. That stopped me in my tracks so I thought then I will just have to suffer and get on with it. Xx

[Heloo85 in reply to Tia1991]

Theres no guarentee with pip. But the worst they can say is no. So dont let it put you off. Plenty do get it for endo. Its how the it effects you. Get a copy of your notes, take them Dr and get referred. The fact you have kidney involvement will get you straight on with a BSGE specialist. Dont be fobbed off, keep going and going! Xx