Adenomyosis and lower back pain.

[Solomimi]

I’m so relieved to have found this group after 3 years of undiagnosed increasingly bad pelvic & lower back pain.

My story....After many GP & gynae appointments (transvaginal ultra sounds, hysteroscopy)I pushed for a laparoscopy to rule out Endometriosis on my other organs & found I had Adenomyosis. I had the Mirena put in at the same time. I had to self fund as I wasn’t classed as urgent enough on NHS which was a huge economic blow. The letter a week later from the gynae didn’t mention anything except there were no findings. However at my 6 week follow up my Gynaecologist was pretty short with me and told me I had Adenomyosis to wait & watch with the Mirena for up to 6 months & if no improvement have a hysterectomy. She did not explain the condition in any detail nor tell me where she found it except that my uterus was enlarged & to see me in October. Since then I’ve been feeling increasingly worse plus headache, nausea, loose bowels. I’ve been getting through the pain with hot baths, hot water bottles, TENS, ibuprofen & paracetamol and Zopiclone at night. I tried Tramadol and felt comatosed for the next day.

There was no one to turn to as GP surgery couldn’t get me appointment with a female gynae trained doctor for over a week & I wasn’t classed as an emergency despite being in so much pain. I went to a Sexual health clinic at nearest hospital and had an amazing doctor talk me through my condition and side effects of Mirena -so much kinder than my expensive gynae! He thought the Mirena could be dislodged which it was, so removed it & I declined his offer to reinsert another one.

Due to have an MRI of my whole spine end of September to rule out back problems as had a lot of pain this time last year and found a small disc bulge so have been on Pregabalin since October 2018 trying to wean myself off has 600mg not helping.

Now want to have a proper consultation with a gynaecologist who’s an expert in Adenomyosis as a be lost faith in my current doctors.

Sorry for so much information!

[AllthatGlitters]

I have adenomyosis too and unfortunately I have learnt more about it from my own GP, online and having being on this forum. It’s a terrible illness and mine is getting worse. When the pain is really bad I take codeine, have you been given this? x

[Solomimi in reply to AllthatGlitters]

Thank you for sharing this with me. I’ve had co-codamol in past but bungs me up but I’m pretty desperate now so will try again. Can you tolerate it during the day as starting a new teaching job next week. Thanks Sophie

[AllthatGlitters in reply to Solomimi]

Hi Sophie no the only time I can take it is when I am home from work, I can’t drive on it as I feel drunk. It’s awful isn’t it that the strong meds have that effect. Maybe take some lactulose to loosen your bowels when you take it so it doesn’t bung you up, your GP can give you some x

[Heavymuseum22]

Hi solomini! I am glad I found your post. We are in a similar situation. However, I can not have an MRI due to a surgery I had to fix my lumbar discs. There is an implant at those levels that is not compatible with an MRI machine. My doctor did an internal ultrasound and there were “striating” lines behind my uterus and it was enlarged. He said it was adenomyosis. I have terrible pain. In my abdomen, waist, hip, groin and ovary area every day. With low back pain as well. I wonder if I am getting a double whammy on the back with both conditions. Some days I am bedridden. Is the coil working for you? I am assuming it’s high progesterone like the one my doctor is suggesting. He is also suggesting a laparoscopy to confirm. He would not perform a hysterectomy. Just look inside and he said he could free adhesions that he finds or scrape/burn any endometriosis he finds. What would you do? Should I try the coil? Or try the laparoscopy? I’ve been on a high progesterone birth control pill for 7 months with no relief. I am already on 1,000 mgs of gabapentin. And on baclofen for muscle spasms for the spinal injury. The pain still manages to come through despite these heavy medicines. Does codeine work for you Allthatglitters?

[Solomimi in reply to Heavymuseum22]

Hi-what a sorry state we are all in but at least we can share notes. I had a laparoscopy after doing my own research into Endo as the Gynea didn't think my symptoms fitted, which is when she found adenomyosis in/on my enlarged uterus.The Mirena was put in at same time, but removed two days ago after 2 months as was feeling worse -nausea, cramps, low level headache and loose bowels which is ongoing.The doc who removed it said Mirena was coming out and I needed to remove and offered to re-insert but I thought I'd prefer to have a second opinion with a gynea specialising in Endo. The gynea does not think back is related but I feel sure it is could be referred pain?The daily pain you describe is almost identical to mine. 1,000 mgs of gabapentin sounds really high, I was on Pregabalin 600 mg daily and am weaning myself off as doesn't help my back pain.I am 50 have had 3 kids so would go ahead with the hysterectomy to be pain free. If I was you I'd go ahead with the laparoscopy as it really wasn't too bad. Having the Mirena is worth a go as its targeted in the uterus so has less side effects and it seems there aren't very many treatment options out there and it's easy to reverse. I'll share any more knowledge as I go along. I've just joined the Nancy Nook and Adenomyosis closed FB.

[Heavymuseum22]

My name is Tayla btw.