Endo?? Adenomyosis??? Going crazy

[Clyders1]

Hi all, I'm writing because I feel like I'm losing my mind and I'm sure I'm not alone.!! I have lived for the last 12 years with a pain in my right side. I have had multiple ultrasounds and laparoscopies and visits to the ER due to pain and no diagnosis to date. 2 years ago I had a gynecologist who removed my right ovary and tube saying I had scar tissue from 2 previous ectopic pregnancies. The surgery definitely cured the excruciating pain I had every other month during ovulation but still didn't cure the excruciating menstrual cramps, the pain during and for hours after sex and when using the washroom. My period pain has since gotten worse, my severe cramps start 2-3 days before any bleeding and then for the first 2 days of my period I'm bedridden with a heating pad. I have regular period cramps all over and in my back but I have excruciating pain in one localized spot. The pain physically takes my breath away. I have swelling and pain to touch the area. I have very large clots as well but i haven't noticed my periods being heavier or longer. February of this year my gynecologist put me on Visanne and it was awful. For 2 weeks I suffered from breast swelling and pain, a constant headache, mood swings and depression. I opted to stop the medication as it wasn't helping. I was scheduled to see the doctor in March then covid hit. I now see the doctor next week and I'm debating asking if she'll just do a hysterectomy. I'm 41 and have my kids. I don't want to continue to test drugs or to go through more tests. Am I crazy since no one has ever said it's endometriosis or my thoughts, adenomyosis? Sorry for the lengthy post, just wondering if anyone has experienced anything similar??

[Moon_maiden]

You aren’t crazy and could be endo involved and has been missed before. Mention endo at the appointment. It can sometimes been seen on MRI, ultrasound if they really know what to look for, which is rare.

Jot everything down to take with you. Is it gynae or GP you’re seeing?

[Clyders1 in reply to Moon_maiden]

I'm see a gynecologist. I'm just very frustrated. The gynae eluded to endo at my appointment in February and I assumed that's why she put me on Visanne but I've never been officially diagnosed.

[Moon_maiden in reply to Clyders1]

Hormone drugs won’t suit everyone, they know that, it’s trial and error with products. A current favourite are things like Zoladex which put you in artificial menopause. Likely to suggest this. Push about endo though, and different options. When I discussed the hysterectomy last month, I asked if he’d check everywhere for endo. I’d read that if it’s not all gone it can still cause issues after a full hysterectomy. He did agree though. There’s a lot to consider and go through.

[H4PP1]

Hey lovely, I am part of the gang that didnt get diagnosed for a very very (6 yrs ) long time too. I am Starting to feel relief from my pain by changing my diet and taking supplements . I have started on organic meat and as little red meat as possible and also taking B vitamins, Magnesium and Omega 369. I would highly highly recommend seeking out some help nutrionally before you get a complete chop... I am noticing more and more that we only get told about surgery or drugs but I am learning there are other ways!