Post Ablation Syndrome Possible Adenomyosis Dr recommending hysterectomy

Hello I'm new to group. I have had painful and heavy periods since first period. I'm currently 45 and for last seven years was having extremely heavy periods with clotting causing anemia tried all sorts of treatments and finally had an endometrial ablation in August 2014. Ablation decreased blood flow to manageable for the first six months with my regular painful cramping.
But the last three months I have very little bleeding with period but the menstrual cramps are unbearable the pain is constant for 3-4 days at times I can't even stand. Naproxen 500mg doesn't touch the pain. I've seen gynecologist and he suggested increase Naproxen dose but it's still not helping the pain. Gynecologist feels its Post Ablation Syndrome and recent ultrasound and MRI indicate possible Adenomyosis. Dr says hysterectomy is my option and it would be done laparoscopically and take out uterus and cervix. I have never delivered vaginally so Dr says vaginal hysterectomy not an option for me.
The monthly pain is unbearable I'm so scared about the possibility of hysterectomy, the more research I do the more concerned I become.
Has anyone else had post ablation syndrome and adenomyosis?
Any thoughts, feedback from those who have had hysterectomy??

Another person from this board posted her doctor did hysteroscopy where he was able to dislodge and remove pockets of trapped blood, a result from her ablation. Per the post it was the trapped blood causing the terrible pain. I know it was in the options and alternatives category. This procedure would give your doctor a chance to see inside you and per many on this board it is a gold standard treatment option. Not only can they see and resolve any obvious issues but they obtain a sample of uterine tissue making it a better option vs. painful biopsy. I know I responded to the poster so you might find it by searching under " sisterduke." Good luck!!

If you have adenomyosis the only cure is a hyst. I had adeno. I'm your age and doing fine now. It was a long recovery , but so glad to be rid of adenomyosis, mine had become very disabling. Glad to have my life back. I wanted a definitive treatment and so happy not to have those awful periods and daily pain. Kept an ovary so still have libido and no bladder issues.

Hi,
I to have had adenomyosis and the pain was like I was in labour again. I am 53 and have three adult daughters. I have had two endometrial ablations and hadn't bleed for years. I had excruciating pain and heavy blood loss just for a few days. At first they thought it was kidney stones and the doctors even thought so giving me a cystoscope. Everything came back clear. The pain would come and go and I just didn't feel right so I went to my gynaecologist and he sent me for a internal ultrasound. Everything came back clear. I still had pain every now and then and on my 6 month follow up the internal ultra sound they found blood trapped and not able to be released causing the pain. I had a total hysterectomy on the 13th of May 2015 - Da Vinci robotic procedure and now feel fantastic. I went home the next night after my op and have rested for two and a half weeks. I will be returning to work on Monday. Yay! It has been an amazing recovery and I recommend this wonderful procedure to anyone who needs a hysterectomy. I am a little apprehensive about getting tired going back to work so soon but I feel in myself I need to move on now pain free. I wish you all well with your health. x

Has your doctor done ulatrasound, and MRI, or a hysteroscopy? Though not all can detect adenomyosis, sometimes it can. Personally, I would feel more comfortable going into a major surgery with a definitive diagnosis. I know that is not always possible, but it's better than just guessing. I understand you feel miserable, but you don't want to come out of a surgery feeling bad still. A major surgery like this is not something you rush into. Take your time to make a decision.

Hi just wondering what you ended up doing? I have similar symptoms and dr has termed it" ablation failure" and thinks adenomyosis also.

Hello thank you all for your feedback to my question. I ended up flying to Rochester, New York for treatment, I'm from Calgary in Canada. I had treatment in Rochester.
I had an ultrasound-guided reoperative Hysteroscopy. Spoke with the Dr in Rochester, New York numerous times he reviewed my case and files and I felt I needed to try this minimally invasive treatment first as I wasn't ready to proceed with hysterectomy. The Dr and his team were excellent I couldn't have asked for a better experience and medical care. I'm so glad i to went to him for this treatment. Surgery went well I definitely had post ablation failure lots of endometrial re growth and a hematrometra that was contributing to my severe pain. Dr cleared it all out with the reoperative Hysteroscopy surgery. My surgery went well but my pathology did not come back good I have confirmed extensive adenomyosis. since my surgery in early August I am having 80-85 percent less pain with my periods than before I went for the reoperative Hystersocopy. I still have some pain during periods but it's very manageable, I feel like I have my life back. The pain I feel now is still from the adenomyosis and its a waiting game now to see if my pain comes back full force and how the adenomyosis goes. The next few months will give better indication. If my pain comes back there's nothing left now but for me to proceed with hysterectomy but I can move forward now knowing I explored and tried all options.

So they did not see the hematometra on the ultrasound? This is what worries me. I had an ultrasound and there was a 2cm "hemorrhagic cystic structure" found in my uterus (not ovarian cyst). I am wondering if this is actually a hematometra and radiologist who read ultrasound report just doesn't know how to identify it as this is not a commonly seen issue. I feel that this is what is causing my pain every month as I can point to the exact area that hurts - not like cramping that is very general through that pelvic area.

Hi Junebuggy76, I had both an ultrasound and an MRI here at home prior to going to Rochester and neither report indicated hematometra, reports indicated thickened endometrial lining and findings were consistent with Adenomyosis. Given the pain I was experiencing it was suspected that I would likely have hematometra.

When I went to see the Dr in Rochester my first appointment with him he does the ultrasounds himself day before surgery and he saw a hematometra on the ultrasound and pointed it out to me. He also saw everything better once he got in to do the Reoperative hysteroscopy, he got rid of the hematometra, also found extensive endometrial re growth and my tests kept saying bulky uterus, it was bulky he found I had a heart shaped uterus with two cavities no one had ever mentioned it to me before. He removed a significant amount of tissue from which pathology confirmed extensive Adenomyosis.

That is interesting. And confirms my beliefs that the diagnosis is dependent on the experience of the radiologist/us tech. I am so confused as to what to do. I feel strongly I have a hematometra but it takes an experienced sonographer/radiologist to confirm that. My US report even said "question if this is related to patients history of ablation". It's like post ablation syndrome is a 4 letter word or something no one wants to make that diagnosis :-(