Possible adenomyosis diagnosis- symptoms and diagnose

Good evening

If you have seen my profile then you will probably see that I have posted a few times recently in relation to a possible new diagnosis of Adenomyosis.

I am posting again to ask some more specific questions - I hope that is ok. The reason I am doing this is because I am finding myself more and more worked up regarding what I was told, and I am starting to feel like I am not trusting the gynaecologist I saw.

Unfortunately, the gynaecologist I saw was the not the original one that discovered my Endometriosis, nor are they the one that myself and my fiance thought was brilliant - one is located miles and miles away and the other has left the country. This left me needing to find someone quick, and I was directed via an NHS gynaecologist to see someone in Bristol, which has a renowned Endometriosis centre and I was advised was an amazing surgeon. In the end, my fiance and I paid privately to see them because the NHS wait was so long.

I am in no way doubting their skills or knowledge - it's just a few things that occurred on the day of and after my surgery that have got me thinking.

This operation was my 3rd specifically for Endometriosis, and from May 2017 - Jan 2018 I had been in the medical menopause in which I was virtually symptom free. After the operation they advised me they thought I had adenomyosis but that they would not be responsible for the pain I experience during and after intercourse, after heavy/manual work, or it being so intense.

I would therefore like to ask (if it is not too personal) what everyone’s symptoms of adenomyosis are? I appreciate it might not be a “one size fits all” thing, but I feel a bit invalidated.

I would also like to know (again if it’s ok) how everyone was diagnosed? My possible diagnosis has come from a laparoscopic procedure. My USS have never mentioned adenomyosis or any problems with my uterus and I have not had an MRI.

I am due to go back next week to see them but just want to be prepared with information so I can question what they tell me if needed.

Thank you

Lauren

[Meme123456]

I had Adenomyosis was diagnosed 2016 by MRI. It was so bad my period was like being in Labor every month. I was in pain and lots of it the days leading to and 3 days in my period. I had A Lap Thursday 21st and they took my uterus out because it was sooo huge and filled with adeno. They didn’t find any Endometriosis even tho they said they exist together.

[ExcitableElf]

Hi Lauren, I’m new here today. Don’t know if you’ll see this but I have had a laparoscopy that has ruled out endo, but have been diagnosed with adenomyosis. I get pain same as you, though I also have pelvic floor problems (it spasms). So some of the pain might be because of that. I get pain when I go to the loo, pain when I walk or lift too much, and a feeling that everything is going to fall out. My lower back is driving me nuts right now.

I’ve been in a medical menopause for the last three months and it’s been amazing. It was used as a diagnostic tool as much as anything, and that’s how I’ve been diagnosed. It’s ended now and the pain is horrible. I’m having a hysterectomy early next year. Hope some of that helps.

[Hidden]

My symptoms are usually around my period. Sharp intense pain which can go on for a couple of days. I thought the pain originally was my ovaries.

When I saw the gynaecologist he gave me an internal scan and said he didn’t think it was fibroids that was causing my pain and to make sure he has prescribed Prostap injections for 3 months. If I stop getting the pain he knows it’s adenomyosis.

[coffeemom]

I don’t know how helpful this will be but I will tell you what my symptoms have been. I have been in excruciating pain with my tailbone for 9 months now. I thought I may have dislocated it but an X-ray showed it is where it is suppose to be. So I have seen a chiropractor during that time to be adjusted without any relief. Finally switched family doctors. I went to her for the tailbone pain, when she was checking my body out she pushed on my pelvic area and I told her I had a lot of pressure there. We talked about my history with my periods and she ordered an MRI in 2 places, my pelvis and spine area where the tailbone is. They found arthritis and adenomyosis. Have an apt with my Gynocologist this month and I’m going to fight like heck to get the hysterectomy so I can stop the pain in my tailbone. Other symptoms I experience, EXTREMELY heavy periods, I only use ultra tampons and overnight pads anymore. I soak a tampon in less than an hour the first 2 days of my period. Blood clots like crazy, you actually can feel them coming out and plopping in the toilet. Pain, heavy and fullness in my abdomen. Pain with sex, tailbone pain from the pressure the uterus is putting in my other parts. I hope this helps, I pray that my gynecologist takes it out, I’m done having children and don’t need it anymore!

[Mari123]

Hi! I got diagnosed with adenomyosis Vis TVUS after an ectopic pregnancy earlier this year. Originally I have had heavy and super painful periods and now in the last half a year I am developing new symptoms. Unless I'm lying down, I feel constant pressure in my low abdomen and bladder, prompting to pee frequently. Indeed sometimes it feels like uterus is going to fall out after I walk or cook or sit in the office. Endo Diet helps to manage flares up but doesn't take away the pain completely.