should I seek a third opinion about endo/adeno diagnosis?

[honeyhills]

I’m just looking for some advice about where I’m at in terms of my endometriosis and adenomyosis diagnoses. Thanks in advance if you read the entire thing!

I have struggled with symptoms since I was 13: painful, heavy periods, pain during intercourse, pain during ovulation, sciatic pain, bowel issues, fatigue etc. I started trying to get help at 15, and have been through the usual rigmarole of trying different contraceptive pills, implant, injection, coil to suppress symptoms. It took until I was 23 for a Dr to suggest it might be endometriosis and I had a mirena coil fitted which did significantly improve my bleeding and pain, but my periods seem to be becoming more regular and ‘usual’ now.

It’s been 3 years since I started seriously investigating the possibility of endometriosis. I’ve had ultrasounds and 1 laparoscopy (2022) by a general gynaecologist who determined I had no gynaecological issues, and it was “likely IBS”. Unhappy with this diagnosis, I sought a specialist referral elsewhere. They did an MRI scan last September which showed adenomyosis clearly. I have just had an appointment with a specialist surgeon (NHS) who thinks doing another laparoscopy is pointless, and that I should be happy with just a diagnosis of adenomyosis and the chances are that they won’t find endometriosis as it’s not on my MRI and they didn’t find any laparoscopically before. I tried hard to advocate for myself and said that I knew many people who have had multiple surgeries until their endo has been found, and that over 50% of people with endo also have adeno. She did end up agreeing to do the surgery, which makes me think if she was so sure it wouldn’t show up, why would she agree to do it?

My question is, should I have this surgery with this specific surgeon, in hopes that they find endometriosis and are able to excise it in order to improve my quality of life, or should I just settle for the adenomyosis diagnosis and continue to try to use the mirena coil as a treatment?

Or should I seek another opinion from another new surgeon?

Thanks again if you have gotten this far and are able to help in anyway x

[TallulaShark]

I find myself in a sort of similar position. I've also been trying to get some sort of gynaecological diagnosis for three years. I had a "normal" ultrasound back then and three years later I'm still getting the "but you had a normal ultrasound" excuse. How long can they say that for? I did eventually have a laparoscopy three weeks ago and I was disheartened when they told me I had no evidence of Endometriosis, but I do have severe adhesions which need further surgery. Because I had a c-section 15 years ago they said that was likely the cause. I said that didn't explain the incredibly heavy periods. She blamed that on my age. Still unsatisfied with this I'm now pushing for an MRI to look for Adenomyosis or Sciatic Endometriosis. I would say just keep pushing until you're satisfied that everything has been done to check. And you are absolutely within your rights to get a second opinion.

[Chel91]

I agree you need another opinion and surgery with an endo specialist to really rule anything out. The only concern I have is are they offering you an endo specialist this time? Surgery with someone who isn't experienced can be a waste of time, or worse (like in your case now they aren't taking you seriously) because of someone else's mistake.

I have a similar history. Very painful periods and issues since my first one. Ultrasounds normal. MRI normal. I sought a highly experience endo surgeon, who found it all over the place and removed it. Pain was immediately all gone. Even though I also have evidence of mild diffuse adenomyosis. I feel like NHS doctors overuse adenomyosis as a convenient diagnosis, when in all likelihood endometriosis is probably far more likely the initial cause of the painful symptoms for most.

[Sunset-lady]

I had a tonne of tests in my 30s. I was very ill in my teens with my period, but it was the 1980s so nobody cared less. In my early 20s I was at university and in constant pain for years. At 35 my bowels changed and I got told I had IBS. Went for ultra sound and had loads of blood tests but they found nothing. Then in my 40s the wheels came off due to peri menopause which hit my endometriosis hard and brought on terrible side effects like tinnitus and paranoia. It was like being 14 again- throwing up and fainting with a period. By the time they got me in for a hysterectomy I was exhausted and anaemic with 5 fibroids, adenomyosis and a large cyst. However, when they went in they found it's totally fused and has been this way for probably 20 years. I have hemorrhaged for 21 months. I am able to calm the pain through diet (no gluten, sugar or ultra processed food) and no alcohol and lots and lots of exercise. I'm on zoladex which has finally stopped the bleeding. My point is PUSH. I'm 51 and I wish I'd pushed more when I was younger. If your gut is telling you that this woman does not have your best interests at heart, and you simply don't trust her to do a thorough job then find a really good Endometriosis Specialist and go with them. It's your body and your health. I would LOVE to meet all the doctors who told me that I was wasting their time and that I seemed to WANT to find something wrong with me. I knew there was something very wrong for years. Don't be dismissed, gather your strength and find a team to support you xxxx