Could it be endometriosis
Hi everyone, I've read alot of your stories as I'm looking for answers and reassurance I'm not losing my mind. Over 12 months I've been back n forth having scans for very painful abdominal pain, bloated making me look very pregnant (I'm not) lower back pain, hip/pelvic/thigh pain, no sleep, nausea, period pain like I've never had my whole life. For the first time in the 12 months I've had to take a sick day because of no sleep and pain. All my scans come back ' nothing found" ok yes thats good but something is causing this pain and interfering with my life, I'm 52 , had numerous painkillers prescribed, no help, gynaecologist and doctor put it to menopause..... I know its not, tried hrt for7 weeks made me worse. Mentioned to my doctor back in November, could this be endometriosis she said definitely not and has now put it down to Chronic Pain Syndrome because she doesn't know. Sorry for long post but I'm just at my wits end 😔
I'm so sorry to hear you're going through all of this! It's very hard to see endometriosis on scans, including ultrasound, MRI or CT scans. I'm curious as to why your doctor thinks it's "definitely not" endo, especially since they can't find another cause and the only way to diagnose endo is through surgery. If possible, I'd suggest you find an endometriosis specialist. A nurse practitioner labeled me with central sensitization a few years ago because I complained of numbness, tingling, and pain in my right leg. I also got a severe cramp with exercise on the same side. (This on top of terrible period pain, which may be due to adenomyosis.) But then I had surgery with an endometriosis specialist last year, he found scar tissue gluing my abdominal wall to my intestines along with endo lesions under my uterus and some other abnormal tissue. I went to see him after a GI doctor and OB/GYN dismissed my concerns. If possible, I would suggest you seek out an endometriosis/adenomyosis specialist. They're more experienced in the area than general gynecologists. If you live in the U.S., you can search the Nancy's Nook or iCareBetter websites for doctors in your area. Please don't give up on looking for answers! - Keri (endometriosis.net team member)
thankyou for your reply . I just want a name for this pain. Its been going on too long now. 😪 I definitely know how that feels! It's possible your symptoms could be related to menopause. But your doctor should be working with you to control your symptoms, which means ruling in or out other treatable conditions. They should have a plan A, B, C, and D to help you feel better, whether you're having symptoms of menopause or endometriosis — both are under treated.
I always go to a new doctor when I feel like I've hit a wall with my current one — which has happened a lot over the years. That's very frustrating and time-consuming, but it's the only way I've ever gotten the care I deserve. Please keep us updated and I hope you feel better! - Keri
Hi
, I'm so sorry that you are dealing with this! Pain + menopause, ugh! While it is common for periods to change in perimenopause, and they may become heavier for a while before they stop, the terrible pain means that something is not right. And is right, endo is not always seen on scans and may need a laparoscopy to identify it. If you gyne doc is not helping, it could be really useful to see an endo specialist, or at least try a different gynecologist to get a different perspective. Just to be clear: YOU ARE NOT LOSING YOUR MIND. Something is not right and it's up to your care team to help you sort it out so that you can feel better. It can be helpful to keep daily track of your pain and your periods and take that information in to your next appointment. And if possible, take a support person with you to make sure you get all your questions answered.
Please keep in touch with us about how you are doing. Sending my best wishes to you! -Audrey (endometriosis.net)Thankyou its just been a long 12 months I want to me again 😔 It's been a long year in so many ways....I'm glad to see that you have an appointment scheduled. Fingers crossed that you make a start on figuring out what is going on. Take good care of yourself! -Audrey (endometriosis.net team)
Hi @chezza04,
Chiming in here to say I definitely think it sounds like something is not right and I also encourage you to find an endometriosis expert who could help get you some answers. Are you aware of Nancy's Nook? (https://nancysnookendo.com/find-a-doctor/) It has this Find a Doctor tool that can help you find highly-trained people to help. Wishing you much luck!
~Katrina, Endometriosis.net Advocate
