Endometriosis.... It's back.... I think!

About 4 years ago I was suffering with heavy painful periods, pain during sex and a literal pain in the ass. I went to a GP who sent me to a gynae... She suspected endometriosis and said the only way to be sure is to have a laparoscopy. Also further treatment was suggested to follow... She did the lap and found some (not lots) of endo attached to my bowel and pouch of Douglas, she lasered this off and while I was asleep she put the mirena coil in as 'treatment'. I woke up to agonising pain searing through my uterus... They knocked me out with morphine, when I woke up later I was still hurting but determined to go home. Recovery was slow... I had 3 weeks off work in total. I went back to work and that was when the trouble started... Pain would ripple through my body radiating from my uterus... It would stop me in my tracks, I'd double up with pain. I can only describe it as contractions. I was convinced it was the coil, each time I'd visit the gynaecologist she would say no, I had a physical exam to make sure it was in place... Couldn't feel the strings, I had to go for an ultrasound to see it. Yep, still there. A YEAR of pain and appointments went by when eventually she caved and tried to take it out... No such luck... I had to have a GA to have it out.... The second I woke up I had zero pain.... I bloody knew it. Fast forward 2 years of normality May 2014....i go on holiday and throughout the holiday feel nauseous... Not once did I actually vomit but nauseous to the point of the sweats, shivers and salivation. This has been me since then... I was signed off work for 4 months because I just couldn't function. I've tried almost every anti-nausea pill known to man, I've been on ranitdine and omeprazole because I've been treated for gastric problems by a gastroenterologist. I've had a camera down my throat, so many blood tests I've actually lost count, ultrasound, MRI. All clear - no stomach problems, gallbladder problems, liver problems nothing.... Then it kind of hit me... I've noticed the pain very familiar pain in my lady parts and backside. The nausea seems to peak the week before my periods.... Hang on... Is this wretched disease back!? I went to my GP and requested a referral to a different Gynaecologist... That is scheduled for two weeks time... I just hope they are quick about getting me on the operating table because I'm getting married in October and I REALLY want to be well for that as well as our 2 week honeymoon directly after...

Sorry that was such a long post I just wanted you all to have a thorough history... I know what it's like looking for someone who's symptoms match yours... Mine is an odd one... More nausea than anything else.... Believe me it is debilitating.... I'll try to answer your questions if you have any... Xx

4 Replies

  • Hi, firstly when you had it the first time did your surgeon laser it or excise, only if it was lasered it's very possible that, that particular Endo has grown again as laser only shaves of the top, excision cuts it from root therefore actually removing the disease from that area, although can grow back but generally takes longer,

    Also because you have been diagnosed you might want to be refered to a bsge specialist, if you read a last called Lindles posts she has explained why this should happen and how,

    I have endo and Adenomyosis and feel sick daily, it's horrid, my sickness is mild like morning sicknes but still a pain,

    I hope you get yourself sorted by your wedding and congratulations


  • Thank you for taking the time to respond... The gynae said that it was lasered which is why it has probably returned. I'm just desperate to see any gynae at the moment but once I'm in the door I will make requests for a specialist... I am willing to travel anywhere (within reason) to get this sorted once and for all... This last year was a complete write off. I have been unable to commit to any excursions. My last holiday (long weekend in berlin) was completely wrecked because of my sickness... I spent the whole time feeling dreadful and back in the hotel by 7pm. Hardly eating a thing and spending at least one night awake all night feeling terrible. I was afraid to get on the plane in case I threw up... It's completely ruining my life. I need to get this addressed but the NHS love to keep you hanging on... I've spent the last year just waiting for appointment after appointment. I even went private to see a gastroenterologist but had to give that up because each consultation was £300... Hey ho.... Only one and a half weeks til I see the gynae... Fingers crossed they don't cancel my appointment again!

  • Hi - can you click on my user name and read my posts on endo and its many symptoms and the one on POD endo. Also on finding a specialist centre. For POD endo you must insist on being seen at a specialist centre and not by a general gynae/obstetrician. I strongly suggest you check out the gynae you've been referred to. x

  • Thank you for your reply, if you see my response to Tboag you'll find a little more out about my illness. I'm desperate to see any gynae at the moment but once I'm in the door (so to speak) I can start making my demands. I'm at the point where I'm angry with being kept hanging for so long... The DR's really don't seem to take Endo seriously do they!? They have no idea how much it ruins!!!

    Thanks again for your sound advice... I'll definitely keep it in mind for my appointment.

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