Worsening mini-periods ~ trachelectomy?

Velvet and Lace, my sister - whom had no children - had a vaginal hysterectomy.

The surgeon that did my abdominal hysterectomy in January, did my cervix removal 2 weeks ago vaginally. He told me beforehand to remove the cervix afterwards can be fiddly for the surgeon - but I am glad it went well.

I was anxious beforehand as I did not have a vaginal delivery when I had my child. Furthermore, there was the risk that the cervix could have been adhesioned onto another organ or colon and that would have meant that it would have been an abdominal operation and the doctor would only know that the day of the surgery.

I am very grateful it wasn't the case and I am grateful for the Lord healing me so far.

After the cervix removal he said that it was like doing the first part of a vaginal hysterectomy.

For you to have a 11 day period once a month after having your hysterectomy doesn't sound like fun - especially at your young age. I hope you can find a doctor willing to help you.

With the Ehlers-Dalos syndrome, is the risk bleeding or that you form lots of adhesions? Is your mini-periods painful?

Most of the mini-periods have been painful, usually cramping that begins before or with the bleeding and lasts for most of the period. It's even a warning that it isn't over yet, since the bleeding can stop for a couple of days and then start up again. If the cramping continues....the bleeding will start up again as well.

With Ehlers-Danlos Syndrome the chief risk is that the wound will split open. Our skin is fragile and stitches tend to rip out. When I had an exploratory laparoscopy in 2002 over these problems I ripped a stitch in the belly button incision shortly after I left the hospital (I believe when my mother hit a large pothole) and it got infected. The incision split open partially, took several weeks to heal, during which time I could barely move around, and a shallow hole opened up years later at the site of the popped stitch that would ooze. So much for a procedure that was supposed to take 2-5 days to recover from.
To avoid this sort of thing, my doctor (who is not the same doctor who'd performed the earlier surgery) decided to use glue during the LSH instead of stitches. This worked very well with the two smaller incisions-in fact since he reused the belly button incision he fixed it, and it is now barely noticeable at all-no more ugly scar and no more hole. Unfortunately the largest incision split open under the glue. When the glue finally came off it was a gaping hole. I had over two weeks of wound care 3X a day until it finally closed, six weeks after the LSH.

The fear is that the same thing could happen to the vaginal cuff. It would take an extremely long time to heal fully at any rate. There's a horror story on an EDS message board I frequent about a woman who had a total hysterectomy and waited four months to have sex with her husband. Her vaginal cuff split open and she had to be rushed to the hospital for emergency surgery. She urged anyone having such surgery to wait a year. It's also unclear what effect, if any, the abnormal scar tissue would have for the vaginal cuff after it healed.

Therefore there is a serious concern that removing my cervix could cause serious damage to my body. On the other hand there is the continued bleeding.

You have my sympathy and empathy. I understand your situation quite well. To make a decision like that is choosing between 12 of the one or a dozen of the other.

I was dreading my mini-periods as it felt like they were becoming more painful each month. Also I tend to have wounds that heal slowly. An appendix operation I had with laproscope was a nightmare for me as it took a very long time to heal and even to go though the hysterectomy was a bit decision for me to take. My abdominal wound healed very well with a special plaster that helps healing on. The vaginal surgery was a big questionmark for me

The thing with any surgery is that it is always a risk. Your risk might be more than someone else's risk due to EDS - but with the pain and bleeding you describe the risk of something going wrong might be less than not doing the operation. You are allowed to have life enjoyment and it sounds like being out of action for nearly half a month at a time is robbing you of you of life.

The lady on the EDS message board / forum that said one should wait a year - does she mean you need to wait a year as you had your hysterectomy a few month ago and that you are still healing or would she think there are better operating ways ahead shortly? Or did she think you should wait to see if your periods would go away?

Personally I choose to have the operation done as it looked like my periods were not going to go away on their own.

To wait with sex for 4 months after an operation is very long but if one know beforehand that it is recommendable to rather wait longer (like for 4 months) than the normal 6 weeks, it might just be something to get used to and do it.

And the same lady on the forum that you mentioned - didn't she do something to cause the cuff to split open? Maybe lifting something heavy or had sex too soon? for my personally, I feel quite well after the vaginal operation and must remind myself of doing the right thing and not lift etc stuff.

The good thing is that they know you have the syndrome and will treat you with caution and you would need to do that as well

Could it be the EDS that helped causing this cervical bleeding after an hysterectomy?

	Quote:
Originally Posted by velvetandlace I haven't had children and some doctors think it is very difficult to do a vaginal hysterectomy on a nulliparous woman. I got into this about the original hysterectomy-he said he could try to do it vaginally, but there would be a substantial chance that he would have to convert to open abdominal surgery. That would be a disaster with my condition. The option of Total Laparoscopic Hysterectomy was never offered-only LAVH or LSH. However, I've dug up recent medical papers stating that vaginal hysterectomy-or trachelectomy-can usually be performed on women who haven't had children by a skilled enough surgeon. it turns out the key is a wide enough pelvis to maneuver around in, not whether the vagina has been stretched out by childbirth or not. Therefore problems arise with women with narrow hips, but that doesn't describe me! I think it's clear that my doctor doesn't feel comfortable trying to accomplish this, however. I also thought of that point about possible granulation tissue: that asking for no bleeding, ever, for any reason, might not be reasonable but that wouldn't be the same as having to deal with periods every 4-5 weeks. Then again, the question is whether removing the cervix would cause more damage to my body than it would be worth. My doctor said he decided on the LSH to start with in order to not cause such damage. Aside from the problems involving the method of removal, my body develops abnormal scar tissue-it has no collagen, it's very thin and does not behave like normal scar tissue. It's unclear what the effects of this would be for the vaginal cuff, other than a really, really long healing process. I read about how a vaginal trachelectomy is done and it made me nervous: any cut to my body will result in slow wound healing and abnormal scar tissue, so aside from the cuff cutting up the vagina could be really bad. I might be better off with laparoscopic/Da Vinci surgery despite the abdominal incisions. It's a difficult question.

It sounds like it is a very difficult decision is for you,much more complicated than for most. That's even more reason to get a second opinion. Your doctor will not even know, if you choose to not share it with him. It may just reassure you that you should stay with the first doctor. Just my opinion though. ;-)

It's likely that Ehlers-Danlos Syndrome has something to do with the bleeding. I had the hysterectomy because of abnormal bleeding that slowly lengthened out from 7 days in my teens to 14 and even 15 days per month (not counting days when it stopped for a day or two and then started again). Nothing would stop it or even slow it down. Abnormally prolonged bleeding despite normal clotting can be a complication of EDS.

My doctor said hopefully the mini periods will stop after a while, but I said the trend doesn't look hopeful. They're getting longer, not shorter. Past history would also suggest they are likely to get worse, if anything.

I'm not really "out of action" for half a month-I just feel lousy. It's not like before. Before I had the ablation I suffered from crippling cramps that left me curled up in a ball sobbing for an entire day. No pain relievers worked. It interfered with school and later work. After the ablation the cramps stopped (though the bleeding didn't), but when the bleeding lengthened back out I became so exhausted I had to cut down on working and had all sorts of health and life problems because of it, including sleeping all the time and getting into minor car accidents because I was too exhausted to think straight.
This isn't that bad-at least not yet. I can still function. If the mini periods get longer, though, that might not be the case.

The waiting I referred to was not for the second operation, but waiting for sex-that it would take an entire year to heal.

I've had to wait almost 8 months for sex (had short spurts of allowed outercourse) but it has still been worth it, in my case, at least.

Warrior