Newly diagnosed. Any advice please.

[Christel]

Hello.

I had been on anti depressants for about 18 years and decided to stop taking them.

Suddenly I was in pain almost each day.

I have always suffered with painful periods/ IBS/ cystitis but all these symptoms became worse without the mask of anti ds.

My gp sent me for an ultrasound & internal ultrasound & I am told I have a fairly developed endometrioma (sp) & endometriosis .

It seems I have to wait 6-8 wks for referral .

My diet is very very clean as I am vegan.

Any pain relief advice would be brilliant please.

I've been prescribed naproxen & cocodomol . I do not want to take cocodomol as I get strong side effects from it.

Thank you in advance.

[Sunflower846]

Sorry to hear ur newly diagnosed. Me to well 4months ago but still new. I find it hard to cope with now but keep a diary of ur symptoms and pain and have any questions written down for ur consultant. Hope u dont have to wait to long. I have bn taking co-codamol but get terrible constipation with it so have to take lactulose. I have now been put on amitriptyline at night for nerve damage from my op. Hope ur meds help, take the co-codamol but take a gentle laxative with it as it helps alot. xx

[katie20]

Hi i was diagnosed in my early 20's, iv suffered for 10 years from endo. At first i was taking Mefanamic Acid, this really did help at first. Its an anti inflamatary. After having my children i have been given co-codamol but im like you i can only take 2 tablets on a night time as they really knock me out. Tried Ammitryptline but these seriously effected my ability to get out of bed the next morning. Im

now awaiting my 4th laparoscopy where hopefully they can laser everything off again as this really is the only thing that has proved effective?

I have a long term relationship with my hot water bottle and am sooo tired all the time, 8pm is usually my bed time! my advice is dont be pushed into tablets or treatment before u have a chance to do some research on it, as sometimes treatment can mask one problem and create alot more!

[Cloudyrain]

Don't discount paracetomal and ibuprofen (or mefanamic acid instead of ibu) I cycle them through the day and when the pain is really bad they take the edge off and make it more manageable. Also, I don't tolerate cocodomal, it makes me feel like my heart will burst, but im fine on codeine so that might be worth a try. Don't get me wrong, it sends my brain a bit wobbly, but when my pain is that bad I can't walk anywhere anyway so wobbly brain is quite nice!

Try to avoid wheat, dairy, and caffeine when your pain is bad too as this agevates things x

[Christel in reply to Cloudyrain]

Thank you all ladies.

I'm allergic to a lot of medication so I really want to try to stay away from the pain killers as long as I can.

I stopped having caffeine a few months ago as it really seems I may not tolerate it either.

I'm vegan so I don't have any dairy & I eat clean . I don't have a lot of wheat but will keep that in mind too.

I think I'm partly still in shock at finally being taken seriously & getting diagnosed . Do most people find it takes a long time to get to the surgery stage ?

[Shellg934]

I first saw a gp about my endo last January. She took many swabs and said everything was fine, nothing to worry about. A week later, I had sex with my boyfriend and had to make him stop almost as soon as he entered. A second gp referred me for an urgent colposcopy. Because I was 25, the Nhs did not consider me at risk for cervical cancer... Seriously. It took 6 weeks before I had my "urgent" colposcopy and biopsy as there were abnormal cells. Thankfully the results were clear. I went back to another gp as I was still in pain. This one said everything was fine and to use lube. It didn't help. The next time I had sex I was in crippling pain and had blood pour out of me. It was horrendous. The next morning my gp referred me for an internal and external ultrasound as an urgent case for suspected ovarian cancer. This was in April last year, I had my scan in July then heard nothing back. At this point my boyfriend had enough and I remained single until February so never chased the results. I resorted to going private 6 weeks ago and had my lap on Friday confirming a severe case of endo.

I hate to say it, but if you want speed and answers, do not rely on the Nhs. I HFCs list count of how many doctors I have seen but only 1 Nhs doc and my private consultant mentioned the possibility of endo. It would seem that not many doctors know about it.

Good luck.

X

[Christel in reply to Shellg934]

Goodness that is terrible.

I think it is just a nightmare. Sex wise I only have a cystitis type pain after & cramp.

I have complained each time about my smear hurting & they just give me damazipan to help me relax which of course does bugger all.

It was only seeing a different gp that brought it all to a head.

Xx