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I was hoping you could all offer me some support/advice. I'm a 33 year old with 2 kids, post Novasure for excessive bleeding who is having knee buckling cramps most likely due to "trapped blood" monthly.
My back story is 4 pregnancies, 1st m/c at 12 weeks w/ hemorraging & emergency D&C, 2nd pregnancy lovely son, 3rd pregnancy missed m/c at 11 weeks w/ immediately scheduled D&C given prior complication, 4th pregnancy daughter with post-partum hemmorraging.
AF was no picnic in my teens (hypothyroid), but after my daughter was born, AF got totally out of control, was severely anemic, losing about 8 oz (250 ml) per cycle based on DivaCup monitoring of flow. Cycles of about 26 days, flow lasting 10. OBGYN and I discussed options and given my age (32 at the time) we elected to try Novasure, knowing if adenomyosis was present (which OBGYN said could only be confirmed on biopsy after hysterectomy) it may not be the end of the saga.
March 2010 had Novasure and out of the gate, I had at least 6 weeks following procedure of bleeding, then another 6 months at least to regulate into something resembling a cycle. Result was what I assume to be a "normal" cycle flow. Not a brochure story for sure, but seemed a lot better than anemia. About March 2011 flow started slowing down to more "normal" Novasure cycles (according to literature), but with the lessened bleeding cramps started. Last few months cramps getting worse and worse. Cycles getting longer and longer (2 weeks of spotting).
This month had old blood for a week, then 2 days of nothing, followed by knee buckling cramps reminding me of my first m/c. Called OBGYN who did the Novasure and he said he could get me in next day. After about 8 hours of mind blowing cramps, AF continued with newer looking flow.
Saw OBGYN today, and he said it sounds like I have trapped blood. He did an internal using a biopsy straw and cervical clamp (ow and double ow) and said he cannot get in at all and there is definitely significant blockage and that while it is good that my flow has found a path, it is small, and he can't get in at all, even with the small biopsy straw. U/S scheduled for Friday. He sort of hinted that a hysterectomy would be the way to fix this as he has a feeling my uterine walls may have stuck together post-Novaure. He said a D&C to remove some scar tissue (my thought) is off the table due to inability to gain access.
So I am waiting for my u/s at the end of the week and am trying to research hysterectomy options/alternatives. I've read lots of posts on here asking about post Novasure alternatives, but given my complete lack of access, I'm concerned.
Anyone else in been in this situation before? He mentioned laproscopic hysterectomy (though he said this wasn't something he took lightly and we'd have to wait and see what the u/s showed), but all the info I've seen on the web mentions a "uterine positioner" that is positioned through the cervix, and now I'm wondering with "no access" through the scar tissue if that's even possible.
Any and all advice, suggestions, stories, hugs, etc. appreciated. Don't know anyone (other than my mom's friend) that's had a hysterectomy, so feeling a need to reach out.
I am 31 and I've never had any children. I've been dealing with horrible bleeding problems since I was 16, once having a period that went on for 11 months. No one has wanted to do anything in the past, since I was so young.
Finally the bleeding so affected my health that my primary care physician put a lot of pressure on the gynecologists and they scheduled a Novasure Ablation.
I had this a little over a month ago. When I woke up from the procedure, I was stunned to be told that it didn't work. They could not get the mesh to open up in the uterus to eliminate the lining. They tried multiple times and it just wouldn't work.
So, I'm definitely not the "poster child" for Novasure either lol.
I am having a hysterectomy in less than a week now. I told the doctors that no matter how much I'd love to have children, I really need to get my life back. Bleeding that never stops for almost a year is not having a life. Also, blood loss was affecting my heart and blood pressure and making other medical problems worse for me.
I have to admit that I'm freaking out a bit now that surgery is almost here. Seeing babies on television is making me cry because I know I can't have any. However, in spite of that, I know that the hysterectomy is going to make my quality of life so much better.
My surgeon is going to start with a laproscopic hysterectomy, but he did say that depending on what he finds in there, it could turn into a full abdominal hysterectomy. I guess I will find out when I wake up. Since they couldn't get Novasure to work, my doctor felt that a vaginal hysterectomy would NOT be the way to go.
Hugs to you! It's not an easy decision to make. I would just say think about your quality of life. I know I'm only 31, but I desperately want my 30s to be better than my 20s, and that is why I have made this decision along with my doctors. I want to live my life instead of feeling that I'm a prisoner to my body.
I hope my story is helpful in some way. Take your time and make a decision that works for you. You have found a great place to find information and stories. I know that I have found this site so helpful, informational, and supportive.
Mysteriousmuse - I'm sorry to hear what you're going through. I do relate that the bleeding is no life. I was crying in OBGYN's office that I couldn't take kids on vacation, go anywhere, etc. while AF visited because flow was too heavy to keep up with. My husband and I were totally thinking quality of life then (when discussing Novasure) and now. Bleeding and debilitating cramps are no life. I hope your procedure goes well! (((HUGS)))
You didn't mention if you have had a 2nd or 3rd opinion. Perhaps you would be able to find some different answers or a better surgery option. Here is a link to our 2nd opinion campaign: http://www.givemeasecond.com/
I hope you are able to find the right answers soon. I am sending huge cyberhugs
Hi michelle, it's michelle!
My dr also had issues getting in my cervix to do a cervical and a uterine biopsy. But my issue was an enlarged uterus that folded within itself. I too have hypothyroid and dealt with horrible painful periods each month. I'm one day shy of 3 weeks post op and I have to say it has been the best decision my dr and I made.
your entire history/story sounds almost identical to mine. I had a laparoscopic supracervical hysterectomy 2 yrs after my Novasure ablation. pathology showed adenomyosis and a 10cm fibroid filled with old brown blood.
My situation is similar. I had NovaSure four years ago because of anaemia and blood loss. I bleed for weeks (to the surprise of the dr). Once this slowed down everything was great for a few months, then WOW, I thought I was giving birth! It has been the same ever since.
Options available start the pill, take pain killers, enlarge cervix, have coil, have hysterectomy! What options! I have heard that coil does not work, I am useless with pills, pain killers do not work, I really do not fancy stretching my cervix and I am scared stiff of hysterectomy in case it makes things worse.
Like you, period starts, blood is trapped, pain non stop, no period for days, then period again, bloated tummy, trapped wind. Pain is ongoing for a few days, stops, and then starts again. I cannot drive because of concentration / pain.
I do not feel that I can cope much longer but too scared to make a decision. Dr told me once you have hyster it is irreversible and if goes wrong 'that's it'
Now I am dreading the next few days, I feel tearful and on a short fuse
What to do? I am back to see dr in two weeks and need to give a decision. I am 49 and should (I hope) start my change, but does the pain outweigh surgical treatment? Help / advice greatly appreciated.
My doctor was going to do the novasure procedure for me in April, due to heavy bleeding very large clots, never ending periods and at that time 2 small fibroids, due to not being able to take the time off from my job I put it off. Well in Aug I had bleeding so bad I ended up in the ER and the next day went to my doctor who told me Novasure was no longer an option and that it was probably good I didn't do it becuase it probably wouldn't have worked. In 4 months one of my fibroids had grown 4X's in size and I also had several new ones. I had the LSH done on Aug.24, and it was the best thing I could have done. I have no regrets at all, so far anyway . I trusted my doctor, he said he had done many of these surgeries so I felt he knew what was best. I hope your doctor can help you make the right decission for yourself. There is so much info on this site. So glad I found it. Good Luck to you with whatever you decide.
update: I have had several u/s since my original post. I now have tylenol 3 that I take in addition to advil, when the pain gets too bad. Ultrasounds at first showed a complex ovarian cyst which has since resolved. More indepth ultrasound/second opinion on diagnosis said that I now have a uterine polyp (although she said it could be trapped blood, it was a little hard to read) and adenomyosis.
OBGYN is saying either hysterectomy or continue on my pain pill regime, as there is nothing else to be done.
Stinks! My hubby and I are concerned about side effects of the hysterectomy. We went with the NovaSure to solve one problem (the heavy bleeding) and got a whole host of other problems. We don't want to chase this surgery with another, and wind up further down the rabbit hole to misery!
I'm glad to hear all of your successful hysterectomy surgeries. Maybe I'll consider it after the holidays. The worst of this cycle is over, and I don't want to spend Christmas vacation recovering when I could be having fun with my family! Still cycling every 25-26 days, so December 4th would be my next visit, and then it'd come again to ruin New Years...but I'd get Thanksgiving and Christmas?