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I use to have extremely heavy breeding n cramping (almost to the point of hemorrhaging it was so bad) until i had the nova sure ablation done about 5 years ago now and I haven't had a period since. About 1.5 years or so ago I started getting bad cramps during my cycle. The last 6 months I've been in excruciating pain just like you ladies. I even went to the ER twice. i knew of the small cyst on my ovary but they said thEy were certain it wasn't causing the pain I was describing. Today i had to come home from work because i was in so much pain which is how I found all of you. I knew going th the hospital would have the same results as the ladt two times so I figured i'd do some more of my own research. I'm so grateful I found all of your posts. Like you, The pain is unbearable and pain meds do not help.i ache in my hips, groin and back as well and there is just no comfortable position. Unfortunately I am without insurance at the time and paying a good amount from the last two visits still so I'm in a tough situation because I can't keep going through this every month ... and leaving work to boot. I know a hysterectomy is my only option but not quite sure when I will be able to do it. thanks ladies for sharing and I hope to reasurf your success stories soon. 

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Well I finally had an ultrasound of the pelvic done with a rod and this resulted in identifying my severe cramping I am now told I have Adenomyosis and this is apparently something that is surfacing for us women who had the ablation done - I was told by the tech that I have it the worst ever seen ultimately a hysterectomy is needed I am blesses to only need a particle which is great so I looked into the procedure being done by the DaVinci robotic it is some what new and your healing time is cut in half? I am hopeful and having it done November 1st so please feel free to send me any questions I wish all women going through this the best because I fully understand the pain. 

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Thank you, thank you!!!Reading your post brought tears to my eyes-I am up now at 2 am with the "death cramps" as someone called them-I too have asked my doctor abt the cramps, dark blood and I felt that I had something in me that needs to get out-hence the bloating,etc-I will definitely consider a hysterectomy at this point because I am in my early 40s and cannot foresee continuing on like this-again, thank you for easing my mind-god bless

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Lolo, I see you posted this 3 week ago. Have you found any relief? Have you found a doctor who doesn't think you are crazy? Post ablation syndrome is real. Don't let anyone tell you otherwise. It was the worst pains I have EVER experienced and although it's been almost two years since I experienced them, I will never forget them.
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gglass..... wow, I feel your pain. I am sorry you are right in the middle of what will end soon. If you do not have the medication to handle this pain, don't try to rough it out, go get help! You will need heavy, heavy pain medicaiton to even tough the pain (if it was the like my death pains.) I am a tough woman who can handle a lot of pain. I grew up in Wisconsin working in the cornfields but this pain was like no other (way worse than natural childbirth).

I'm so sorry you are going through this. Post ablation Syndrome seems to be getting diagnosed more frequently. I have been part of this forum now for over 2 years and the posts of women desperate to find out the problem are becoming more frequent.

You posted 6 hours ago and I hope you have found some relief. My heart goes out to you. May your heating pad and pain meds bring you relief.

I hope you have had time to go back and read the full forum from beginning. It was heopful to me to know that others were experiencing this and I wasn't crazy!



Thinking of you.....
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Well I will also lend my two cents to this. I am 50 years old and had an endometrial ablation done almost exactly a year ago. I spotted for MAYBE a week or two afterwards, and haven't had any type of bleeding or spotting since, as well as no cramping. Last month, I had a two week episode of severe breast tenderness, but no other symptoms. This month, however, I had the same two weeks of severe breast tenderness, followed by moderate to uncomfortable cramping over the past two days. There has been no spotting at all. I can't say that they are "death cramps" but they are very very low, and definitely uncomfortable. I haven't consulted my gynecologist yet, but am scheduled for a general physical in two weeks and will approach the subject then. I hope you all are able to find answers, and I will post as I find them also.

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Perii - I also had severe breast pain in the beginning and nothing else. I honestly had forgotten about hat part until you posted about yours. I hope for you to find answers and for your pain not to advance each month.
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Maribb,  I cannot get an explanation for the pain I've experienced.  I was supposed to have a hysterectomy, but chickened out.  I'm 50 and figured I could tough if out till I reach menopause. But in September, my ghost period was so bad, I had to go to the ER.  My regular BP of 120/70 was 194/91, a sign of pain.  They gave me morphine and it didn't do anything!  finally got relief when they gave me dilaudid which is 10 times more powerful than morphine.  

I was in the hospital for 5 days.  I had a CT scan, MRI, MRA, ultrasound, and colonoscopy.  All normal!  So the doctor says the good news is, there's nothing wrong with you, the bad news is, they have no clue what caused the pain.  So, since I've met my max out of pocket with my health insurance, I'm getting the hysterectomy on 12/12.  The evil uterus must be removed and killed!

So, I understand your frustration on not being able to get answers and not having doctors believe the pain you're in.  The only thing we can do, is warn other women NOT to have endometrial ablasion.  I have also told my daughters not to get their tubes tied, let the men do it.  It's a much quicker recovery for men.

I will try and post after my surgery, to let you know how it goes!  Good luck to you, and all the other women who have to deal with the pain.  Don't be afraid to take the pain meds....you need them!

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That is exactly what happened to my Mom.  She had two kids, many years apart.  Had one of the old copper IUDs which caused infection in the 80s, that may have contributed to the scarring.  She had a couple of DandCs over the years too.  She went through menopause and then had an ablation to control the erratic and heavy bleeding.  About three years later her cervix scarred shut and her uterus enlarged and filled with fluid causing excruciating pain and it took several weeks to diagnose, the ER didn't help at all, and then she had a happy Hysterectomy.

I am scared because I am not quite 38, never had kids, and don't want kids, definitely now that it probably wouldn't work anyway.  I have a uterus full of fibroids and a persistent thickened endometrium and I have tried different birth control pills, progesterone which works great but isn't sustainable, Lysteda which works great but isn't sustainable, a failed DandC--which had me bleeding giant clots five days later, herbal remedies, and the Mirena IUD.  I expelled it last week in an appalling 13 day extravaganza of bleeding, clots, and painful cramps.

So I am scheduled for a hysteroscopic myomectomy and ablation on 12-7 and I'm just afraid I will be in the 10 percent who still go through all this and have to get a Hysterectomy.  At least if that happens, I will know what the "death pains" mean and just go for it ASAP.

My actual question is:  what to do about birth control now?  condoms are OUT as far as hubby is concerned, he'd rather have a vasectomy.  I hate to do that to him, plus we can't afford all this!  I just lost my job before my uterus revolted last week.  The elesse things that they stick up your tubes sounds like a weird thing that I'd build too much tissue around, if I know my nethers.  I don't want to have my tubes tied for similar reasons.  I haven't had good experiences with pills since I hit about age 32.  I wonder how all this impacts natural hormone production?  I wonder if spermicide and "pull out" would be good enough for people our age, my husband is 43.  Thoughts and experiences?

 

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I have not been on for awhile.... what seems like AGES now. Things are progressing quickly now for me..... I had originally scheduled my hysterectomy for December, but over the last month I have continued to have no breaks in pain at all. The doctor didn't want to keep me on the medication for that long, as the pain was continuing to worsen, so I am now scheduled for surgery on Friday!!! I am having A LOT of anxiety, but know this is the right thing to do!! I think now the scariest part is that even though the new doctor had a name at least for all of this, there is no way to SEE it, or a diffinitive way to DIAGNOSE it, and I'm TERRIFIED that "WHAT IF" this doesn't solve the problem???? As I look back over people's posts, I just can't believe how many women have been affected by this and how few doctors have any knowledge of post ablation tubal syndrome!!! My original OBGYN really did a number on me at my last appointment, and I know that plays a huge role in the anxiety I'm having. At my pre-op I couldn't stop the tinge of fear when the doctor (who I like VERY much and truly think he knows what he's talking about) explained again that he thinks that this is the correct diagnosis and feels sure that the supracervical laproscopic hysterectomy will solve it "based on my description of what has been going on". Mnfun2bme..... I find your posts to be INCREDIBLY comforting, and you truly are the one who has given me the most hope and reassurance that this IS real and it CAN get better!! I'm wondering if there is anywhere that anyone has read about others who have gone through the surgery and had positive results. I could use some extra support going into this surgery..... And thank you ladies for sharing your stories!!! Knowing that I'm not alone means EVERYTHING at this point!!!!  

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Ok gosh, my story is so much like everyone else's. I had a tubal with my C-sec in 2008, then in 2010, I started bleeding so heavily and for months at a time. So I underwent the ablation in the spring of 2010. it seemed like the PERFECT solution for me. And honestly, it was......until it wasn't. This past spring I started experiencing mild cramping in my back. Then it got worse. It started spreading to my lower abdomen and right groin. the pain was worse than child birth. It would last for hours and go away away. And the next day it would happen again for a few hours and go away. Then it got worse and worse, lasting longer and longer and no breaks between days. I went to my Gyno who didn't take me seriously and sent me to GP who said it was a muscle problem. I have been through MRIs, X-rays, CT scans, PT for pelvic problems....but in my gut I know it is this. The pain is awful. My ultrasounds have come back normally so my Gyno will not even consider it being anything gynological. I am so confused and don't know what to do. The pain is on both sides, but much worse on the right. I am trying to track if there is a "flare up" when my cycles would normally happen. I would love to consider a hyster, but my fear is what if the gyno is right and it's nothing and I take out part of my body for nothing. I don't know what to do.......

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Thank you for posting. I hate to hear you are having these issues but know that I am right there with you. My story mirrors yours and I just went to the gyno again and was given birth control to try. At this point I am willing to try almost anything since nobody takes me seriously and send me from one doctor to another. Keep us posted and I will do the same. I have found so much comfort in this discussion board...so thankful for it..makes me feel sane.
Take care,
Sarah
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Oh my, my , my..... I am so sorry for both Maribb1 and SarMai. 

This is an actual medical diagnosis with a code used for insurance purposes.

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Have either of you suggested the diagnosis to your docs?  If so, what type of response did you get?  When I initially talked to my doctors about all the research I was finding online.... whenever the doc started to brush it off, I was insistent they listen and when they did not, I found different OB docs.  The process was frustrating and time consuming.

I wish I could tell you both that the pain gets better, but just as it seems to be doing in your cases, the pain gets worse and more consistent to the point where it did not go away.  I sympathize with both of you and the pain you are feeling.  There weren't enough drugs in the world to keep the pain away.  The heating pad could not stay warm enough!  I did end up buying these great water bottles  (not the cheap ones made in America..... but the good old fashioned ones made of an awesome product that stay warm all though the night.)  Let me know if either of you is interested, I'm happy to give you the link. 

I encourage both of you to continue your search for an OBGYN that will LISTEN!  Interview them over the phone.  When you call to make an appointment, ask if any of the docs in the group have had experience with post ablation syndrom.  Tell them you need someone who is willing to listen to your issue.

I encourage both of you to get a support system lined up.  If your path continues to mirror mine, the pains become consistent without the weeks in between.  By the time I got everything diagnosed and had surger, the timespan was 5 months and pretty much after 2.5 months, the pains were not going away.  Line up the help while you still can.  I am not saying any of this to scare either of you, I just want you both to be prepared.  It's difficult, it's frustrating but you will make it through.

Keep us posted.  I will answer questions if you have any and if either of you are in the Minneapolis area, I'm happy to recommend doctors.

Lisa

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Thanks everyone. I think the thing that scares me is that because I've had so many procedures done the pain has changed over the last 5 months. My GP thought this was a joint issue since I talked about pain in my lower ab, groin and back, so immediately sent me to have a cortisone injection in my hip. No one wants to believe this could be caused from my uterus. In fact my gynecologist has me doubting myself that this could be something else, like muscular. But my initial instinct was always that it had to do with my uterus. Even when I went to the ER, they referred me to an Ortho doc. I am barely living because the pain has taken over my life. My muscles are so weak from constantly being on the couch with my feet up. I just hurt and this sucks. 

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Girlieinpain... if you don't mind me asking, where are you?
I will assure you that my pain started in my back as well. In fact, I thought I was having a kidney stone (which from my daughter's previous experience with them, there is major back pain involved.)
I am happy to try to help you in any way I can as far as seeking out a doctor who is familar with this.
I'm so sorry you are in this horrible, continual pain. I've never experienced anything like it before or after that time of my life.
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