Can anyone relate?

Hello I for the past 4 years have constant stomachs cramps and lower back pain and pain in my hips and legs, feel tired a lot, sometimes the pain makes me feel nauseated, I have pain during sex I bleed very heavy up to 2-3 times per month, I have had pelvic inflatoy disease around 4 times and have been treated with antibiotics, but never had any further investigations! I stopped bleeding in May for 2 months so doctor send me for a scan as I was bleeding very heavily again, and it showed the lining of my uterus was very thick after a period I was them referred to a gynaecologist and she thinks I may have endometriosis and had told me to have the mirena coil put in first of all to see if that relieves any of the symptoms as laparascopy is risky she said? More so where I have had caseran as well with my son! Do my symptoms sound like endo? And has anyone else had the coil and it is helped? Only because I've been on the mini pill before and that produces progesterone just like the mirena! Any thoughts would be helpful, it's frustrating constantly being in pain and not knowing what it is!

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  • Hi Charlie,

    yes your symtoms do sound like endo. As for the coil I tried one for a year and a half my bleeding was less but the pain was worse and my moods was of the chart, I'm not perfect now but I'm not as crazy,my headaches was worse, skin was really bad and it did not stop the endometroma growing in my c section scar. I can only say for me some women are great with it , it stops the bleeding and they feel better but for me never again. It gave me really bad back pain too I do have pain anyway but it's not as bad now it's been removed. I gave it a year and a half to work and it just made me worse, I was so depressed. The doctors tell you that it has very little hormones and it shouldn't effect you that much but for me and thousands of other lady's it has a profound effect on there mental health. On the flip of the coin I've read about the women that it has really given them there life back. They tell you to try for six months but if you do try it, keep a diary of symtoms etc if the bad out ways the good then you can have it removed,but don't like me, let the doctor keep on persuading you to keep it in if it's effecting you in a bad way. I nearly lost my mind and my relationship. I ended up having a lap, I've got c section scar, and I'm glad I did because I know that for all these years the pain I was feeling was real and not it my head. I'm having another lap on the 6th Jan to cut out the endo then hopefully I have better days x I have adeno as well but I will cross that bridge when I've crossed this one big hugs x

  • Yes this sounds like endo.

    Some docs like to take the softly softly approach. Laparoscopy isn't that risky with a specialist, unless perhaps your case is more complicated due to caesarean?

    The coil can be effective, to be honest I found it quite uncomfortable and pain worse but I know a lot of people who've had great success with it. I would say that you are better to have a diagnostic lap and excision of any endo prior to having the coil fitted as this gets rid of any pre existing disease, then the coil dampens down any new growth.

    Say to your gp that the doc has suggested you have endo, and that you'd like to be referred to a specialist at a specialist centre for a second opinion re. Treatment/laparoscopy. Here is a link to a list of centres so you can find the one closest to you.

    bsge.org.uk/ec-BSGE-accredi...

    All the best x

  • Hello yeah I have had a caseran around this time last year so scar tissue will be quite new still, but I know how my body reacts on birth control, my mood swings are terrible at the minute anyways because of constantly feeling like poo, is that private referrals the list you give me? X

  • No, it's not private. If you are in mainland uk and are diagnosed with endometriosis, particularly stage 3-4, you should be seen at your nearest specialist endometriosis centre. It's a better service than General gynae. Specialist docs/nurses, pain management etc. All managed at the one place and your gp can refer you.

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