I have been diagnosed with Endometriosis....

[Anamesarovic123]

Hi all... I have been in and out of hospital with abdo pain and constant nausea weight loss.. Loss of appetite... And loads of other symptoms... Doctors telling me it's IBS!! Got a gyne appointment and sent me for a laperoscopy straight away! Found endo...and other stuff. Post op 2 weeks my symptoms have come back again.... Feeling nauseous all the time... I just cannot cope anymore. Going to try see my GP this week. Any advise or help? I'm feeling so down. And fed up of feeling sick and no appetite and pain! I'm usually a very tolerable person. But just had enough now!!! Thanks Ana

[MariaannXx]

Hey this happened to me for years they have told me it's ibs I went down to six and a half stone can't eat always in pain! Finally they sent me to a gyno they said could be endo but your too young really( I'm 21) a week later had the op and found I had servere endo everywhere and removed most of it. I then found out I was pregnant after the telling me I can't have children( I was preg when they did the op) so through my pregnancy the scar tissue was stretching which was very painful. Now my daughter is 4 months and the endo pain came back almost straight away when it's apparently supposed to get better so I've got a scan today to see how bad it is. I've been to the docs and they give me some tarts called mefanemic acid. It's not really working for me but may work for you x

[MissAmyRes]

I was the same I was at the doctors twice a week for ages and they kept telling me it was ibs. Only got my diagnosis a few weeks ago. Ask for an anti sickness tablet. I use cyclazine. It works well for me. Hope you find something x

[Anamesarovic123 in reply to MissAmyRes]

Thanks for your comments. I'm 22... I'm on a cocktail of medication... Cyclazine... Mefenamic acid... Paracetamol.. Etc... Unfortunately cyclazine isn't working too well now. And megenomic acid is hurting my stomach (due to being an anti inflammatory drug) And having bowel issues. I'm starting to loose my appetite again. I lost 2 stone in 2weeks- in March when I was in hospital. Although I have my diagnosis (very quickly compared to other endo suffers) i feel like I'm going backwards!! xx

[esbjorn in reply to Anamesarovic123]

Hi Ana

So sorry to hear what you are going through. I am a lot older (than you) but endo developed very quickly on me as well (loosing a lot of weight rapidly, feeling unwell (as if having flu), nausea, severe pain). Within 8 months of the first symptoms (vague pains, lower back pains, 'gastric' flare ups and constipation) I had developed chronic pain, lost 2.5 stone within the last 2 months etc.

I am on naproxen (another NSAID), a PPI (proton pump inhibitor - to protect the stomach lining against the NSAID), effervescent codein+paracetamol (for fast action pain relief), macrogol (to control constipation and reduce pain when going to the loo (sorry tmi)), paracetamol + mirena coil. This whole concoction of meds+coil brought the weightloss and pain under control. It was first when I was started on Prostap injections (GnHR) however that I felt I got my life back (as it was before) - got my energy back, most of the pain gone - fantastic! (side effects there as well though, please be aware). As the effects from the latest Prostap injections are waning some symptoms are re-appearing and I'm waiting to see what to do next.

Just wanted to say that there are medications out there that can help, some will help control some of the symptoms not completely but then others will help instead and against some of the other symptoms. Unfortunately endo appears to be as varied as we are and the combination of medications that work for us is often trial and error.

Your body will have been through an ordeal, it will take time to heal from loosing so much weight, the acute localized inflammation caused by the lesions and all the inflammatory symptoms. If you try to do too much too soon, even weekly food shop, carrying light bags, lifting the washing, hoovering etc may cause the lesions inside your pelvis to inflame again and for you to have a flare up.

My own weightloss - which came with each of the 1-3/weekly flare ups - was only controlled 6 months after the diagnostic laparoscopy when I asked if I could take the NSAID in two higher doses twice a day rather than four doses/day. Then the NSAID was finally strong enough to control the acute inflammatory weightloss. Sometimes it will take time for medications to finally work - they ask that you give the mirena coil at least 6 months to 'work its magic'.

I wish you all the best and hope that you will find the strength to keep on asking for the combination that will finally work for you. Take care xx

PS I'm also on green tea (angiogenesis inhibitor) and have banished all foods high in phytooestrogen (legumes such as soya and peanuts - I'm even having to be careful with peas & beans!)