struggling with Adenomyosis

[Dartmouth93]

Long post sorry in advance, I’m just struggling today and need some advice. Can anyone recommend an adenomyosis specialist? My consultant was a BSGE endo specialist so I had high hopes but since I was diagnosed in November after my laparoscopy he discharged me. He’s told me my adeno isn’t responsible for my other symptoms other than my heavy painful periods. So my leg pain, fatigue, bloat, bowel issues, migraines etc aren’t related apparently. He says if I had chosen to have the coil that may have helped me (I decided against it when he did my surgery) and said to go to my DR for pain relief if I continue to have issues and I only need to go back to him if I have issues trying for a baby (he just assumed this is is my life plan)….I decided not to have the mirena coil because I had 18 months of no periods following the back to back pill and prostap so wanted to give my body a rest. Since coming off everything in June 2021 I’ve had 1 period which was really bad in May 2022. I keep getting symptoms like I’m going to come on but then nothing and still have the bowel issues despite moving to an anti inflammatory veggie based diet. I don’t know what to do. I’m starting counselling again tomorrow because I feel like I’ve suffered some form of medical trauma in recent years but don’t know how to deal with the physical symptoms. I try my best to keep positive but I’m 6 weeks into a new job and am struggling with a flare up the past few weeks. I just want to know how I can live my life without the constant pain and symptoms. I’m also trying to lose the weight which piled on during prostap but it’s so hard when having pain during exercise and doesn’t seem to budge even controlling calories. I’m 29 with no children so they won’t consider a hysterectomy even if I begged for one. Both aunties and my Nan have endo but the Lap only showed adeno for me. I’m made to feel ‘lucky’ that this is the case but feel far from it sometimes..thanks for reading if you got this far xx

[Moon_maiden]

I am so sorry you’re going through this. Your consultant isn’t the right one for you, do ask your GP to refer you to someone who deals with Endo/Adeno and fertility. I didn’t have children, for you that’s different and your allowed to want to speak to someone who can and want to help if that’s a route for you. There are women who’ve had hysterectomies early because of issues. You’d need regular bone scans and HRT if you do.When you speak to your GP ask for full blood test including all hormones, vit D, AB’s, magnesium. Thyroid, in-depth, not just the basic one. I’m not sure about testosterone, I know it’s a thing in menopause, no harm in checking if your GP will. Personally it’s something that’s been ignored for women so very little evidence.

If your GP won’t, ask for an endocrinologist referral. Don’t automatically go down the antidepressants route, you have physical pain and emotions from hormonal conditions, Drs need to be reminded of that.

If you haven’t, request your records from the hospital.

You know your body.

I am still pushing, something new, I paid for a CPET, exercise test for heart, lungs, oxygen. The pre op ecg in Feb said border line abnormal. The test came back with things I had to pay a cardiologist to interpret as GP ignored. Turns out I have some sort of heart failure and waiting for scans.

I’m only adding this to show that if in any doubt persist in answers 🙂

[TennisCourt]

Hey lovely. I know this is a long shot as this is from a year ago but I wanted to know how you’ve got on? This week I just had my first lap which showed no endo but “looks like adenomyosis”. I genuinely thought I had endo, so I’m quite confused. Mine was also with a specialist so all very strange xx