I could really use some advice and someone to talk to.

[ell94]

Hey. I'm 19 and have just been diagnosed with Endometriosis. I have suffered from the horrific symptoms for about 6 years now. I've had countless numbers of scans, and in 2011 a laproscopy showing no signs of Endo, just a cyst on one of my ovaries. I have cysts on my cervix as well as severe cervical erosion. I also had a CIN 1 result on a smear about 2 years ago, although these have now gone back to normal. Each day I suffer from pain, bleeding, back pain, discharge, clots, pain during sex. My mood swings are horrific too. It makes it virtually impossible for me to hold down a relationship and I don't feel as though I have anyone I can talk to. My gynae wants me to start on prostap with add back therapy but he hasn't particularly explained this to me. If anyone could offer any advice or help that would be great x

[Amb43]

Hi hun, so sorry you are suffering and it's getting you down, it really is a horrible disease, not only the physical pain, but the isolation, lack of social life etc. sending hugs.

The only thing I would suggest is, seeing as you had your Lap in 2011, you should request another. Endo is a very fast growing/spreading disease, and it could well be a different story "in there" after all this time. You certainly seem to have the symptoms. Talk to your Gynae, tell him how it is effecting your life, and if no joy, go back to GP and ask to be referred somewhere else, preferably a Specialist Endo Centre if there is one near you.

I definitely needs to be another Lap as abdominal and transvaginal scans DO NOT show Endo.

Good luck and don't let yourself be fobbed off. I have first hand experience of sticking up for myself, with great results, so you go girl!! xxx

[PinkDaisy]

Hi Ell94, sorry you're having a tough time of it.

I'm not on prostap, but have just started Zoladex injections with add back Tibolone (Livial) and I think these do similar things. If you haven't got a copy already, request the 'general pack' from Endometriosis-UK (endometriosis-uk.org/inform... which I found really helpful to read about the different treatments. The idea of the Zoladex injection is to send my body into a menopausal state to stop the hormones being released & try to suppress my endo growth ahead of possible further surgery. However there are side effects to cutting off these hormones so the Tibolone 'adds back' some hormones to try to combat the side effects.

Lots of people on here are on prostap so I'm sure you'll get more responses but hope this has helped a little.

You should also feel able to discuss this with your gynaecologist and ask them as many questions as you need about the course of treatment they are suggesting, side effects, reasons for the choice and other options, so that you can make an informed decision

Hope all goes well xxx

[sj_is_charmed]

I was on Prostap a while back and although I had relief from the Endo, I suffered with the consequences of menopuase despite being on 'add back therapy'. Although, I would gladly suffer those for the relief I had. The problem with these treatments are that they are short term/; not licensed for longer than 6 months because of the effects of removing oestrogen, and within weeks my symptoms were back.

Talk with your specialist about long term solutions. I feel that doctors are more interested in short term clinical wins than the long term quality of life of the patient. Do your reading before seeing drs, make sure you are armed with knowledge and information.

Hope this helps xx

[Lynne_support Partner Endometriosis UK]

Hello ell94,

We're sorry to hear that you are having a tough time. You might wish to call Endometriosis UK's free helpine, which is staffed by volunteers who all have experience of endometriosis. They cannot offer you medical advice but they can talk through any treatment or questions you might have. The number is 0808 808 2227 and you can find the opening times at endometriosis-uk.org/suppor...

Take care.