Endometriosis UK

Pain! Endo not getting better, even with mirena coil!

Hi everyone,

After 10 years, I was told possibly I had Endo. After scans, and numerous birth controls. All the scans I had said look fine and no sign of endo - I was finally scheduled to have laparoscopy in June last year. They found I had a cyst the size of a golf ball on my left ovary, and advised me this is what the pain was, as there was near to no Endo. They fitted the mirena coil to help reduce pain and stop my periods to help what little Endo I had. For the first 3 months I felt like a new person!

Really got into fitness etc then all of a sudden, I'm struck with horrid Pain! I had to go to A&E.

I referred myself to family planning clinic- they have done checks on my coil which is lower then usual but wouldn't cause pain. They did another scan and interestingly my right ovary has decided to move under/behind my womb! Which is a classic sign of Endo.

Now I feel deflated, depressed and my anxiety is taking over. The worry of having to go through it all again 😣

Has anyone else had a similar experience? How was the mirena for you? Also what pain management do you try? Anyone had ovary problems?

Thank you. 😚

Danii

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Hey sorry to hear you’re suffering. My ovary used to attach to my bowel and cause me endless pain and so I had it removed 2.5 years ago. Unfortunately my bowel then stuck to other organs so the pain hasn’t subsided. I had the mirena coil fitted for 3 years and had it removed 2 weeks ago. I kept getting very painful cysts and felt this was due to the coil. I’m going to see how I get on for a while with no hormonal treatment. In terms of pain relief I use tramadol and amitriptyline daily. X

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Thank you for sharing your experience, I'm thinking of going without hormonal treatment too see how I go. Only thing stopping me is having periods, which is a whole lot worse. The nurse I see is worried the coil will increase cyst reoccurring.

Suppose I need to look into pain killers when i next see them. I'm using my pelvic floor electronic unit, that has a TENS programme. It's not something I can do at work 😕

Hope everything goes well for you,

Xx

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Hi Danilouise

Sorry to hear what you are going through. Have they checked to see whether you have Adenomyosis? That won't be visible during a routine laparoscopy. I had an awful time when I was on Mirena. I was put on it to control my heavy bleeding and chronic pelvic pain. Instead of bleeding when I was supposedly menstruating I bled practically every single day. I was basically spotting in between heavy periods. The pain was worse than ever and it made me gain over a stone in extra weight. Emotionally it turned me into an emotional wreck and I was practically suicidal. After 7 months I had it removed and demanded a laparoscopy to diagnose why I was still suffering so much pain. It turned out I had stage two endometriosis which the surgeon treated by cutting it out during my operation. Whilst it's inside you the medical profession will usually assume your body may be reacting to the effects of the Mirena Coil. Have it removed and demand another lap. Or ask to find out if you have Adenomyosis. I was diagnosed with suspected Adenomyosis before they discovered I had endometriosis and I had to demand my lap. Regarding pain killers I take mefenamic acid and ibuprofen because I didn't want Codine or Tramadol because I heard they addictive.

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