OMG! I am 34, had the edometrial ablation in July of 2012 and these pains are crippling me. I dont have a cycle anymore, thank God, but I do spot irregularly. But I often ask myself was the ablation worth it all. I feel lied to as well because none of thes POST symptoms were discusses with me, only how my heavy bleedin would stop and the pain would be lifted.
Hi my mom is having the same problems you are, she dosent have the money to cover the cost of a hysterectomy. would you happen to know something to help the pain besides the operation? thanks, Melissa
I have an appointment with my OBGYN tomorrow (124 miles round trip) to address the EXACT same things you all were kind enough to share and elaborate on in this forum. I am SO RELIEVED! I have been to the ER twice in the last two months with the same type of pain you all describe: crippling pelvic pain, that leaves me unable to walk, stand, speak, and that radiates down to my left and often both knees, numbness and weakness in the left leg, agonizing pain in the left ovary area, lower back pain, extremely swollen and painful breasts prior to the onset of the cycle, distended and swollen belly that apparently is triggered by my bowels becoming sluggish with the onset of my cycle, bowel movements tend to set off these horrible cramps, urination becomes difficult during them, and only Toradol was able to relieve the pain this last trip two weeks ago (ER). I have also noticed that I am slowly gaining weight, about 3 pounds with each cycle that doesn't come off like it usually does post cycle. In February I almost passed out from the pain while driving; I had taken Tylenol and it did NOTHING to offset the pain. I ended up in the ER that day. This month my children missed one day of school because I could not drive or stand or walk while waiting for Naproxen to take effect (it never did, ended up in the ER).
I had a Novasure endometrial ablation in the spring of 2009 and had been pretty pleased with the results, in spite of my cycle returning lightly about two years after the procedure was performed. I had the procedure due to heavy bleeding (menorrhagia) that had left me so anemic that I needed a blood transfusion. Instead of a blood transfusion, I opted for nutritional supplementation that cleared it up in 3 weeks. (Apparently orange juice increases your iron absorption by 300%). After the procedure, I was told I had fibroids and those had been the source of the heavy bleeding and clotting I had endured for about 15 years.
Last June, these painful cramps started. I was going through a stressful time so I attributed them to bad diet and lack of exercise. The pain was controllable with OTC meds, as well, so I gave them little thought. Last November, they grew more painful and I began making earnest changes to my diet: fish oil, cutting sugar and gluten out of my diet, reducing inflammation, stress, and making some major life improvements. I saw my OBGYN in January about abnormal bleeding: I was having TWO cycles a month and it appeared that Naproxen my GP had given me for the cramps was STOPPING or SUSPENDING my cycle, only to have it return a week later. My OBGYN asked me to report any new symptoms but we were both hesitant to do anything at that point.
In February, as described...it "hit the fan", in spite of all the dietary changes, lifestyle changes, etc. The pain is indescribable. In 30 years of cycles, 2 children, and a removed gallbladder later, I have NEVER had this kind of pain before!!! I am a martial artist and a weight lifter as well, I leg pressed 1300 pounds at one point and 800 pounds in my down time...I have a VERY HIGH pain threshold and can handle quite a bit. Both of my children were delivered vaginally and the second child presented in a compromised manner (her fist was up by her face, so her shoulders were enlarged) within five to seven contractions and I STILL have never felt this kind of pain. When it is lighter, I can breathe through some of the cramps. Sexual stimulation loosed a horrific bout this month that led to the ER; but orgasms DO alleviate the lighter cramp days. It lasts for about two days, the worst of it does, and it is GETTING WORSE.
Yes, I got the looks like I was crazy at the ER, my GP is a Veteran Affairs doctor and she seemed dubious as well. I think a lot of medical institutions these days are far too vigilant for pain medication abusers or addicts, in spite of the fact that I have not taken a narcotic pain killer in many, many years and they can verify this with a single glance at my medical records. They really are getting into their own way on that front, as far as thoughtful treatment goes. And as someone with approximately 360 cycles behind me that never landed me in the ER BEFORE, I think I should see different reactions from medical staff when they are confronted with the history and symptoms that I give them.
I am going to push for a partial hysterectomy; my aunt had one for the same thing as this runs in our family. I would have opted for one in 2009 IF I had been informed of this syndrome and how debiltating it is. My cervis is certainly sealed shut; I had two different practitioners try an IUD implantation and they failed due to scare tissue blocking the cervix. My cycles are not normal now, they release these strange brown and red little scab type blobs and vary between dark brown and bright red fluids. There is very little flow now, so there is a blockage and backing up of any lining trying to shed itself now.
I think ablations were a medical procedure that may not have been tested and assessed enough before it was launched on the public. Time will bear out their contraindiction for patients with fibroid and endometriosis histories. If the numbers really are accurate and true, that nearly half of all ablations end up with hysterectomies within five years, then obviously this procedure is a waste of time and was attempted on the public before any honest examination of their short term effects were known. Some of us are having complications within months, not years. It was not that difficult to see a pattern and case studies I have seen on the subject date back to the mid nineties, so SOMEONE knew these procedures were not for every woman being shopped for them. And I am sure there was a great deal of money to be made off of them, as well, and have been. If I am angry about anything, it would be that informed consent does NOT include telling me all the great things about a procedure but failing to let me know I may not be able to walk or drive at some point in the future in these episodes I am seeing now.
I am optimistic about my appointment tomorrow. My uterus is not likely to recover from this procedure and I have to be able to drive, walk, stand, and speak so I think the issue will be resolved soon enough with my OB's help.
Good luck everyone....do your homework. I didn't in this case and I paid for it. Hugs!
I am 37 years old and had a Novasure ablation done in Nov 2011 (also had a uterine polyp removed). Prior to the procedure, the pain associated with my cycles was unbearable. Besides the pain, my bleeding was so heavy I was constantly uncomfortable and fearful I would leak through my tampon, pad (yes I needed BOTH) and clothing! So, after hearing about the procedure from my doctor, I said, "yes!"
The procedure was easy and until now, I didn't have any complications (or ANY cycles). Then, this past March I began having pelvic pain. It was dull and just a nagging thing at first. However, that "dull nag" has developed into crippling pain. There's no word but excrutiating to describe how it feels when it hits. In the beginning, the pain would come, last a few days and then disappear for many weeks. Now the pain is coming more frequently and more aggressive every time it hits (typically every 2 weeks now). When I first felt it, I thought I could pinpoint it - almost like a muscle pain (which it how it was originally diagnosed). Then it began to feel like someone was trying to "ring out" my ovary the way one would a wet towel. Now it's progressed to feeling like someone is literally cutting my inside out.
After 2 trips to my primary care, 2 trips to my ob/gyn, a CT scan and an ultrasound, a "non specific fluid filled sac in the endometrium" has been discovered. My ob, without hesitation, stated she believes this is "post ablation syndrome." She stated clearly that there is no cure and I responded by pointedly telling her there's no way I can live with this pain.
Fortunately for me, my ob isn't going to waste much time. I will be following up with her shortly and will most likely be heading back to the OR for a hysterectomy. I'm hoping that will be the final step to RELIEF.
OMG, this is a wonderful site! Unfortunately, I can relate too well to the type of excruciating pain that all of you are describing. I had the Novasure ablation done in 2007 due to shooting/stabbing pain in the hopes that it would offer relief. It did resolve this issue and I have had only 4-5 periods since that time with only moderate pain. I thought I was in menopause, my hormone labs revealed that, for the past 1 1/2 years and no periods. I am 49. Then, a couple weeks ago, the searing pain began. I have never given birth, but these pains HAD to be like or worse than labor pains...I could almost time the contractions to every 5-7 minutes for 1-2 days. I ended up in the ER, and had not been there since 1999 when I had my gallbladder removed. The ER doctor was horrible and give me nothing for the pain, discharged me with 5 mg Percocet. At least I had a pelvic and intravaginal ultrasound done while there. There were a couple masses in my uterus, which could have been blood clots. I switched gynocologists and noticed in my records that my cervix is stenosed (blocked/scarred shut). I did recall an attempted in-office dilation in 2009 when I was having some periods, and they could not get through and it was very painful. So, my new gyno says my options are a D & C (under general anesthesia in the hospital) or laparascopic hysterectomy with cervix removal, keeping the ovaries. I'm really leaning toward the hysterectomy as it seems that a D & C is often unsuccessful in being able to get through the scar tissue, it grows back, needs repeated or increased pain. I'm not opposed to the hysterectomy, but am only concerned with any future effects in the pelvic floor as I do have vulvodynia (vulvar vestibulitis) due to decreased estrogen with atrophy. So, I'm wanting to make a faily quick decision so I possibly only have to go through one more cycle of this pain. However, also don't want to make a rash or extreme decision just based on the fear of this pain. Thoughts?
It is so good to know I am not alone with my symptoms! I have been suffering the same pain as everyone has mentioned in their posts since 2006 when my ablation was performed, and I am now scheduled for a hysterectomy. My question is this: once the hysterectomy is done, does the pain stop? I would love to hear from those who said they were scheduled for a hysterectomy to find out how things worked out for them. Thanks!!!
I just wanted to post my experiences with these symptoms and this syndrome, in case my experiences can help someone else alleviate their pain, find a way to access a health care or a semi-solution, or know they are not alone in the serious pain this condition can inflict on a woman.
I am 43 years old, a Marine Corps veteran, was a power lifter, a jet mechanic, and worked on two black belts while working 60 hours a week in IT/Computer Science. I became anemic in 2009 and a local Navy hospital OBGYN department recommended and performed a Novasure endometrial ablation for some polyps (benign fibroid tumors) and menorrhagea (heavy bleeding) that had brought the anemia on. For two years I enjoyed cycles with no flow and I was able to exercise and drop 20+ pounds and return to working long hours at a good paying job. In 2011, my cycle started to return in trace amounts. I was not having cramps, however. In June 2012, I started having hard cramps and a medium flow, especially if I drank coffee. I used over the counter (OTC) naproxen to control the pain and started limiting my caffeine intake. I grew tired and took a lower paying part time job as a result. I started gaining weight at this time also.
By February, 2013 I was jobless and having cramps that were so painful I was hyperventilating while driving my car, nearly passing out. 500 mg prescription Naproxen could not control these cramps. My cycle slowed down also, and I noted black blood at the end of the cycle, as well as tiny red and black clots. I reported to emergency rooms again in March and May 2013, for a total of 3 emergency room visits for pain control. I could not stand, walk, could barely speak through the pain, and it was worse than child birth (I have two beautiful children I delivered vaginally). The pattern continued, with my cycles growing shorter, the blood was blacker longer, and the tiny clots were appearing if I did have any flow at all. I also noticed a growing pressure in my lower abdomen and it became uncomfortable to wear mid rise panties or pants that tied under my belly button anywhere. My pain meds also increased, from 500 mg Naproxen to 325 mg Oxycodeine/Tyenol and Codeine/Tylenol. All of the pain meds lost effectiveness by June 2013, I had no blood discharge at all, the cramps were lasting for several days instead of one to two, and I had taken too much Percocet/Tylenol in June 2013 that I had signs of liver damage (profuse sweating, orange urine, lethargy, fatigue, upper right hand abdominal pain, a feeling of fullness after small meals).
I am a Category 6 veteran for health care in the VA medical system, so I am last in line for urgency of care with the VA but I did keep them apprised of all of the emergency room visits and I was pushing the VA OBGYN for a hysterectomy of any kind by April 2013. He had never heard of Post Ablation Syndrome and suggested I had endometriosis as I had leg and ovary pain with these cycles as well. He suggested a 6 month course of Lupron, which I declined over side effect worries, and I wanted an actual biopsy and confirmation of endometriosis or worse before I took something that long and with such serious side effects. I also have a large liver hemangioma, which the Mayo Clinic indicates there is a possible correlation between birth control hormones and an increase in size for liver hemangiomas. I am also overweight since the start of the painful cycles and I have been treated for anxiety, none of which Lupron helps with. This VA OBGYN rescheduled my annual June pap smear for August but during the June appointment, I convinced him to let me try and stop my cycle entirely with Ortho Novum mono-phasic birth control pills, by skipping the placebo pills. He agreed and as soon as I tried the OCPs, the cycle was stopped and so were the emergency room visits. He wanted to use this as a permanent fix to the problem but I am about 10 years out from menopause and the OCPS can create the same concerns as the Lupron for weight gain and larger liver hemangiomas. My uterine also still feels bloated and sore so I got a second opinion at a local women’s clinic and I am now scheduling for a partial or full hysterectomy, pending imaging and pre-surgery consults in the next 2 weeks. I was told during this second opinion consult that my uterus was “very big” three times, as if the clinician was shocked. She also added that I had “thrown enough at this problem”. Even without the visits to the emergency room, I still have pressure in my lower abdomen and discomfort wearing clothing across the lower belly. The OCPS are never going to fix that.
Key words you can look up and show your OBGYN for these symptoms are hematometra, cervical stenosis (mine is completely blocked and my VA OBGYN confirmed this in April 2013), and of course, post ablation syndrome. The product sheets for Novasure actually recommends against ablations being done on women with uterine fibroids. If you have a history of fibroids or polyps, the scar tissue or the fibroids can return and the results are not pretty if your cervix ends up stenosed, or blocked. I am opting for a partial hysterectomy, but given the severity of my ovarian pain, I am wondering what state my fallopian tubes and ovaries are actually in and if they are even salvageable. Even now, drinking more than 8 ounces of soda pop causes small bursts of pain in my ovaries and a general feeling of malaise. Caffeine is out at this time.
If you cannot afford the surgery to address this problem, you CAN use mono-phasic birth control pills to stop your cycle entirely. Just skip the placebos. Tri-phasic pills do not work as effectively at this. This can save a lot in emergency room bills, if you are not insured. No emergency room I visited had a CLUE as to what this was, including military or civilian hospitals, despite the growing stats on the internet that about 10% of all ablations end up with this syndrome. The clinic I am utilizing for the surgery is a women’s specialty hospital that we are fortunate enough to have serve the low income. It will cost me a few thousand out of pocket to get this taken care of, but it will be the best money I have ever spent, I tell you that much. They work out payments systems for lower income patients, but everyone gets treated, irregardless. If you do not have access to such a facility in your state, start checking the states near you, it is worth it to fix this condition if you are suffering from it. My male VA OBGYN was clueless and belligerent; I will not be entrusting the VA again for something that could have been cancer, an infection, or a pocket of old blood in my uterus that was growing larger with each month of these symptoms. Do not take no for an answer from an ignorant, apathetic OBGYN that has outdated information or limited resources to treat you. Push on and get yourself taken care of. Hugs and best of luck everyone!
From what I have seen, hormone replacement therapy has NOTHING to do with this syndrome. It appears to be a mechanical issue with the cervix. If the cervix is blocked (stenosis) by scar tissue from an ablation or fibroids that are growing back, blood becomes trapped in the uterus instead of being shed (hematometra). This trapped blood can also reportedly back up into the fallopian tubes and make them swell and even rupture. This pain is associated with painful bowel movements, leg pain, back pain, and lower pelvic pain. The trapped blood can also apparently lead to infections, as mine did. I don't see how hormone replacement therapy can fix all of that; it was never even brought up in any discussions with the GYN performing my partial hysterectomy. It almost sounds like your post is an advertisement of some kind, for a pharmaceutical or a doctor's office.
Not that I wish this experience on ANYone, but it is so comforting to hear other people's stories regarding this problem.
I had a Novasure ablation (+ tubal ligation) at 44-years old in 2005 due to fibroids. Afterwards I did not experience the loss of periods like I was hoping, yet I had no problems early on, and was happy to give up birth control pills finally.
Then in 2009 I began having thee worst PMS cramping I can possibly imagine. Pain medication would not touch it. My bowels are definitely affected, as others have indicated. I saw a female gynecologist who I felt dismissed me by giving me a new prescription for birth control pills. The intense pain was eliminated with them but instead I developed low grade cramping for 2 or 3 weeks of each month. Not being happy with this remedy (What if I could not renew my prescription for some reason? The bc pills are like my lifeline right now. Plus I require the highest dosage available for them to be effective.) I recently saw a male gyno and he is the one that indicated this syndrome. I will be following up with a partial hysterectomy in the next couple of months. Like the commenter before who asked about it, is there anyone out there that can testify that a hysterectomy resolved their issues? I can't imagine mine won't, but I'd love to feel reassured about losing this nasty part of my physiology.
I truly wish that I had just received the partial hysterectomy in 2005 in the first place.
i am 55, and 2 1/2 years post Novasure ablation. The pain, cramping, and fear of what it has done to my bladder, bowel, and blood chemistry is beyond anything I ever dreamed of. I was leading a very active athletic life the day it happened, and have not consulted a physician because of fear of further experimentation or that he will likely send me to a non-GYN specialist. The procedure destroyed my life. I am incapacitated by one medical corporation the State of Indiana subsidizes, and in fact had never heard of Novasure before the weeks I received it. Interestingly, I had been recommended a hysterectomy in my 40s, and can now see a direct financial link of physicians and insurance companies selling this procedure. I look 5 months pregnant and understand the anatomy of the bowel, the bladder and the uterus. My husband and I are wondering if gynecologists practice this procedure on their wives.
Thank you for your Positive outlook and your post was only positive one. Thank you God bless. Peace and love
I cannot thank each of you enough. I thought I was alone in this, or the pain was all in my head. I'm scheduled for a hysterectomy on 10/30. Previously I'd been on birth control pills to control the pain. I switched insurance companies and my new insurance didn't cover contraceptives so I quit taking them. That's when the pain started and got continuously worse, to the point of scheduling surgery. Now, I've been given information that contraceptives are covered again by my insurance company. I'm almost to the point of being disappointed. I've finally made the decision to have this procedure done and now I don't need it. Do I take the pill for the next few years until menopause is complete, or do I have the surgery, take everything out and move on with my life. Decisions Decisions.
Hi there - going through pretty much the same thing :(
liljen, how are you getting along now x
just wondering if you had a hysterectomy ? and if so how are you?. I find there are a lot of people on here talking about having hysterectomy but never any updates about it. I need more info on the pros and cons of hysterectomy.