I feel like I have ready my story over and over again on this list. I had the ablation done 2 years ago and one year later I got pain in my right side that made me feel like my appendics ruptured. I went to the ER and after much testing they sent me home on percocet and said to followup with my doctor. I followed up with my family doctor and OB and they both said that they see nothing wrong just a small cyst that should not be causing me such pain. My OB was a bit upset I kept pushing the issue and finally agreed to give me an ultrasound while having the pain just to see if there were any changes they could see to compare with one while not in any pain...at this point I am trying anything and everything.
The pain continues every month and some months I can take perscription advil and others it takes 2 percocet at a time. When it is unbearable I can not funcion at all for 3 - 4 days. My OB gave me an RX for birth control to try but I don't understand why they are not interested in digging deeper. I am 35 and can not image having this issue for 20 more years.
I am interested in hearing what remedies have worked for you all, what you have found test wise, as well as if anyone has a good doctor they would like to recommend. I live in the Mid-Atlantic region outside of Philadelphia, PA.
Thank you so much...just knowing I am not the only one going through this and am NOT crazy has helped me a ton already!
Hi jsjzmaietta...
I'm sorry you can relate to the story. It honestly was horrible. I will NEVER, NEVER forget that kind of pain. I continue to refer back to that part of my life as the "death pain" chapter. I was thankful to have such an amazing partner. Today I have no more pain there is one thing that I would like to tell people on here though. It has now been 1.5 years since my hysterectomy that took me out of pain. I reflect now that I made the decision to have the hysterectomy rather hastily as I just wanted out of pain! I didn't do a lot of research about hysterectomies... I just wanted it done!
Hind sight reflection: I had a partial hysterectomy (uterus removed with laproscopy). Just this past week, I went to the doctor for a pap smear as I still have my cervix and ovaries. Although there were no signs of cancer, they found endometrial cells on my cervix and apparently, they are supposed to be the kind of cells that are only found in the uterus (which I no longer have). They also stated that my cervix is "falling." Apparently, when you remove the uterus, there is less to hold things up. I now have to go in for a biopsy of my cervix for the endometrial cells issue . I have to deal with my cervix and bladder "falling". I am now 46 years old and I am starting to have PMS symptoms each month. My breasts get tender each month and I am actually having bleeding each month - almost like a light period. I am a bit concerned about all of this which prompted my trip to the doctor. I imagine that I will end up having another surgery at some point to remove my cervix although I pray the biopsy comes back okay.
I would have had better things to say if I'd have written this just 3 weeks ago.... but it's a sensitive time for me as I continue my path to finding out what's going on now. The ablation was supposed to fix things and led to major issues, the hysterectomy was supposed to fix things and that has led to its own set of issues. I'm going to research high and low before any more decisions are made. Thanks for asking how I'm doing. I feel so badly for you to be going through such a horrible thing. I wish the CDC would launch an investigation into the Novasure procedure. It seems there are many of us that have VERY similar issues. Do you mind if I ask if you have had your tubes tied? That seems to be another link.
Hi there...
Yes, this sounds like post ablation syndrome. It seems that many doctors are not willing to admit this is a REAL issue. My guess is the pain you are feeling is from the pockets of fluid that want to get out each month and can't. The pockets of fluid were diagnosed or seen on an ultrasound for me. An ultrasound showed the pockets of fluid but I once had a vaginal ultrasound WHILE I was in the horrible pain and it showed a very large uterus and pockets of trapped fluid.
The first two doctors I saw ignored my problems..... the third doctor was willing to think outside the box... but it was Mayo Clinic who was certain and confident with the diagnosis.
As you probably read in my past postings, they wanted to put me on a drug that would stop my periods and put me into menopause so my body wouldn't want to have periods. That drug made me crazy. It was not pretty for me or my family. Crying one minute, laughing the next. I was an emotional mess.
I remember your feeling of thankfulness to find others who were going through the same thing. This blog is a blessing for many.... and it's why I continue to write on it a year and a half later.
Keep me posted. I'm happy to answer any questions on how the process went for me.
Oh my...I am so sorry you are going through all of that. I did have my tubes clamped about 14 years ago and my ablation was 2 years ago. I did see in my research about the symptoms of "falling" after a hysterectomy and the doctor schedule me for one due to the pain but I cancelled it. I am just at a loss as to what I should do now. I too, wish the CDC would investigate it and have looked everywhere for trials for such issues to participate in but have found nothing. Please keep me posted on how you are doing? Can I ask where you are located? I would love to find a local group to join and then maybe between that and our collective voice on here we could get some attention to this matter. I write this today on Thanksgiving in pain on my couch not able to do anything.....just does not seem right.
How are you dealing with the pain now? Are you taking hormones? I am thinking about starting the birth control pill to see how that will work. I regret having this procedure done so much. Funny thing is my friend had it done too and has not had one problem. I guess I should have known as she had no pain with the procedure and I was in horrible pain for about 3 days after the procedure...just wanted to curl up and go away.
Thank you so much for your post.
Did your friend have her tubes clamped or not? Again, I'm just really trying to connect all the dots.
I can usually get away with just Advil for pain now... which is a far cry from the days of needing to take both percocet and other drugs. I literally had to basically drug myself so much that I couldn't stay awake back in the day. I wish I had good news for you but I will tell you that my pains started coming monthly and then they began lasting so long that it wa almost a permanent pain. I remember being in a restaurant one day when the pains started and I had to high tail it out of there and get home.
I have found women on another blog, too who have experienced similar things. Sorry that this Thanksgiving you sit in pain. The whole thing is so frustrating. I'll be curious to see if the pain subsides for just going on the pill. I can't imagine it will unless you are on a type of pill that will actually STOP you from having a period. If you are still building the lining in your uterus each month and it can't get out, my fear for you is continual pain. I'm surprised they didn't try to force you into menopause. It doesn't sound like the doctors are on the right diagnosis path yet for you.
I'm in the Minneapolis area and there are many doctors to choose from including the Mayo Clinic which is south about an hour. My husband literally drove me down there one day in so much pain I could barely stay conscious. A bit of advice. Build a network of supporters that can help you on the days you're in pain. I'm the type of woman who was a single mom for a long time and I thought I could do everything myself..... being flattened by the pain was a very hard time. Hang up your superwoman cape during those painful times and get the help you need. My heart goes out to you. I'm certainly willing to continue walking you through this horrible time. So sorry!!
Thanks so much for your response and support.....I am so glad I have found you on here. My friend did not have her tubes tied or clamped. Today I noticed a dime size blood clot which I have never noticed before. Pain is much better today and I expect it will be gone tomorrow. Please share any other groups I can join as I want to learn as much as I can. I plan to start the pill Monday as that is the earliest my pharmacy can get it in.
Thanks!!!
Had an ablation in June 2011 due to non stop bleeding initially great, but for last 6 months have had such extreme pain have been hospitalised and given morphine am now awaiting hysterectomy after Christmas, when I saw my Consultant today there was a student with him doing his thesis on women who experience severe pain following ablation so this is obviously a problem and am angry this was not high lighted before hand as I wanted a hysterectomy from the start and was talked into the ablation.
lisar ~ not sure this is still active! just read ur post..my story almost identical. did u go to mayo? what was the conclusion/outcome? thanks, mk
I am so upset as I have continued to have the pain and the doctor put me on birth control to only have a CT scan today to find a mass on my uterus. I just don't understand whey my OB will not listen. I have found a new one but they can not get me in for awhile so I have to go with my CT scan results to my current OB but seeing a different doctor, thank God there are several.
I wish there was something I could do or report I could file on behalf of all of us. The ablation sounded to good to be true and was it ever! Biggest regret ever!
So now to go to my OB Friday to see if I need to get an MRI which is what the radiologist recommended.
Thanks for listeing, and helping me know I am not going crazy.
:) My original doctor said there was nothing I could do either...just live with the pain (severe, could not move, could not think straight cramps!!). All this after CT scans, sonograms, colonscopy, lapriscopy to rule out any underlying problem. Switched to new GYN, his suggestion was to start low-dosage birth control. The pain did go away. But, after 5 years (started 2007), I wanted to get off birth control pills. Stopped cold turkey Sept this year. Been taking topical natural progesterone cream - Restored Balance PMS. Have had very slight cramps a couple of times....but manageable. Glad to be off all drugs!!!
It is becoming more clear that ablation is a temporizing procedure, has variable effectiveness, andf may often cause delayed pain and cramping issues from trapped pockets of endometrial lining that shed without an outlet, from reverse menstruation into the abdominal cavity and uterine scarring.
Hormonal manipulation has side effects: progesterone for osteoporosis and bloating, estrogen for other problems, such as clots. The Mirena(R) IUD, which has only local progesterone effects, is probably the best thing to try first for heavy bleeding. These are the preferred solutions for someone who may want another child in the future. Hysterectomy is the definitive solution for these problems, including complications of ablation. Women may miss the deep component of their orgasms with this treatment - also possible with ablation. JSS-MD
i had the ablation done three yrs ago burning the liner of the utres.now ive stated having cramps like crzy.ive had a hida scan it was normal.what can be causing this is it normal if so i wished i could get some answers.
Hi JHamer - Wow, I hadn't been notified that you wrote. Sorry it's taken me so long to get back to you. What a horrible story about your bowel obstruction! What a nightmare! From what I remember --- I woke to no pain but I do recall the surgery recovery was long. It was difficult for me to need help for as long as I did. How are things now? I recently had major blood work done. They discovered that I have an autoimmune disease that is killing my thyroid. By going on thyroid meds (almost 6 weeks now), my period cramps have somewhat slowed each month, my breast tenderness still comes each month and I'm getting a pseudo period each month because they didn't do a great job on the hysterectomy. (leaving part of my uterus) In the bloodwork, they did hormone testing as well and I see that doc again on Apr. 2nd. She didn't want to do anything hormone related until she got my thyroid under control. We retest for thyroid on April 2nd and who knows what's next? I completely agree with there needs to be something done. Wish I knew a good attorney who handled this type of thing!