Hi, in the past 8-12 months I've suffered from extremely painful periods, to the point I was collapsing monthly, even temporarily losing vision. I finally went to the doctor about it (only had telephone appts so far) and she said she agreed with describing it as 'a degree of Endometriosis'. She recommended trying contraception first to see if it alleviated the pain, stating the Mirena was the most effective. I didn't really want to go on any contraception, but I didn't feel like I had any alternative. I had the coil fitted, to at least say I've tried it and after 2 months it seems to have helped with the period pain, however my periods are now light but are lasting 2 weeks each time. I know the settle period for it could take up to 9 months so hopefully that will get better.
After research into Endometriosis and hearing other's experiences, I'm quite concerned about the possibility of tissue growth on my reproductive organs which could have an impact on me later in life either with pain or fertility. I know many have had laparoscopies to confirm or remove tissue growth but I'm aware this is very invasive and a big decision. I don't know what to do! While the coil is helping, I'm worried what could possibly now be happening inside of me that I now can't feel or see and if it could have a negative impact on me. I'm struggling a fair bit with feeling like I'm so out of control of my own body and having a contraceptive implant in me that I don't really want, even though it does help. Can anyone offer any advice that could help me during the early stages of diagnosis? Thank you x
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SpookyCow
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Hiya, so far I've only spoken to my GP as she seems reluctant to send me to a specialist yet. I'm just confused how she can tell me I have Endometriosis when we've never had a face-to-face appointment and she won't send me to a specialist to get it confirmed or investigated? I've tried voicing my concern about this but so far I haven't really gotten anywhere so I feel like I'm lost in a grey area.
A gp wouldn't really be able to diagnose endo - so I'd defo push for referral to a gynecologist. Endo needs to be seen to be diagnosed - sometimes deep endo can be seen on scan/mri, but more typically its diagnosed by laparoscopy.
Have a look on the endo UK website, but in my experience/opinion your gp is not in a position to diagnose this disease.
Thank you! Honestly the more I've researched the clearer it's become that I'd need further investigations by a Specialist to be able to diagnose it - I really appreciate you getting back to me It hasn't sat right with me since she said it because of not having any in-person checks or consultations, so I'll definitely keep pushing to be seen and have it confirmed or what else it could possibly be, all I know is something isn't right! ☺️
Hiya it may be best to be asked to be referred to a gynecologist consultant. Having a MRI should be able to show where it is. It's a long painful road but little steps take you a long way.
I have had the mirena coil for 11 years now. It has helped immensely with my symptoms and I had remained until 2 years ago pain free and the coil stopped my periods completely which was a bonus. The first thing the gynae team told me when I presented with extreme pelvic and abdo pain was to get the coil 😒 not helpful. They then removed it and put me on oral contraception which made my symptoms worse. Had a new coil fitted. I then had a laparoscopy where they confirmed and removed endo which they said was very mild deposits and that I had a bulky uterus and adenomyosis. A year on and I am now having a hysterectomy on Thursday.
Whilst the coil is helping to reduce your pain you are entitled to see a gynaecologist who specialises in endo to give you peace of mind, diagnose you properly with investigations and help you make an informed decision about your treatment. If your current GP won't refer you see another one. You are entitled to a second opinion. Explain your anxiety and concerns about your health and fertility to the GP.
The last 2 years has been nothing but hospital and doctors appointments but you have to keep going back and make yourself heard (in a polite way)
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