Is this endometriosis? And has anyone else been given rigevidon for suspected endo?

This is my first post on here, but I have been reading posts with interest as I'm trying to figure out if I have the condition or not. I am just back from another frustrating visit to the doctors. I have been having ongoing issues for 2 years. My main symptoms are

Severe lower back pain through cycle but worse during period and ovulation

Pelvic/abdominal pain

Heavy but regular periods

Cramping after sex

I am 40 and have 2 children that were concieved easily. Pre children I was on the pill for many years but before this I always had awful periods, really heavy with nausea and leg pain.

I have adult acne which is a lot worse before my period and I also have fibrocystic breast disease which I have read often goes alongside endo. So I know I have some kind of hormonal imbalance. I also suffer with anxiety and I feel like I'm stuck in a vicious cycle of pain and stress which are making each other worse.

I have been referred to gynaecologist who did a vaginal and abdominal ultrasound and told me there was nothing unusual just some small unremarkable cysts. I was prescribed mefanamic acid and buscopan and sent on my way. The buscopan did not help and the mefanamic acid helps with the pain but makes me really drowsy so I rarely take it.

I went back to the doctor and she advised I try the pill, as I am 40 she gave me cerazette (progesterone only) I think this helped a bit for a while but the pain soon returned. I also bled every day on it so stopped after 3 months.

They then gave me amitriptyline to try but this also did not help with the pain just made me drowsy and gave me palpitations!

This time I have been given the pill rigevidon, although not recommended for women over 40 she said it would be ok as I don't smoke, am not overweight and don't have high bp.

The dr has agreed that it could be endo but has said that having a laparoscopy is invasive and can cause lesions itself so would not recommend it. I feel like I'm being fobbed off and am a bit scared to try the rigevidon due to my age and some horror stories I have read about mood swings etc.

I feel like the pain is unbearable most days and it is affecting my relationships with my children and husband as I'm so mardy all the time due to the pain. I don't know what to do, should I ask for a second opinion or give the rigevidon a go? Any advice appreciated x

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  • Felt as though I had written this post myself, currently sitting on my local gynea ward where I have been for last 24 hours waiting for Lap in agony so am following to see what the say for you and I will update for you to have some info sending you good wishes X

  • Hello,

    I'm sorry you are having such a hard time. It's not always easy to get a general gyne to listen to you when it comes to dealing with endo.

    You have three options;

    1/ you can go back to your existing gyne and try and push for a lap but as he/she doesn't seem to understand endo I wouldn't bother.

    2/ you can tell your doctor you would like a second opinion and ask to be referred to a BSGE centre. These are centres that have special accreditation for dealing with endo, you can find a list at: bsge.org.uk. You have a right to do this so don't let your doctor tell you otherwise.

    3/ you can pay for a private consultation with a good gyne who you can check out online and knows about endo. If you make sure that specialist also works for the NHS they will often add you to their NHS list and you can go from there.

    Most of us have had to fight to get diagnosed so you are not alone and if you want any help deciding on which BSGE centre to go for - you can ask for feedback on here but but only via private message of you can join the facebook page.

    Victoria x

  • Lap finally done very confused as obviously not endo specialist said full of endo though not Active endo so no treatment done. Very very sore cyst had shrunk to 1cm and lot of fluid in side so they unsure if the cyst had ruptured in mortal agony and very confused hope your ok and how's your treatment going. Xxxx

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