Help! Best type of hysterectomy???

[Susan P.]

Hi, I am hoping for some help. I have had IC for 23 years and have been fairly stable with occasional flares and only low level discomfort. The only treatment I have ever had is to do the "Holding Protocol" taught by Lowell Parsons, MD, which I have done since the early 90's and which has helped almost normalize frequency. Over the last 10 years I have had increasingly larger uterine fibroids, and I was hoping they would shrink post-menopause, but in the last 18 months since my last period, they have only gotten bigger. They are huge now, and not only press on my bladder, but they cause general pelvic pain and aching. I have finally realized that I really do need a hysterectomy. Now the problem...I am scared to death that when I have a hysterectomy, it will traumatize my bladder and cause a major IC flare. If that happens, I am just substituting one pain (fibroids) for another (IC). My doctor wants to do a laparoscopic assisted vaginal hysterectomy (because that is what she is good at), but that is very traumatic on the bladder and removes important nerves that are in the cervical area. I want to have a laparoscopic supracervical hysterectomy, in which my cervix is left in place. The operation would take longer, because they have to chop up the uterus and remove it through one of the ports (sounds gross, but I actually watched the entire procedure online, and it was not that bad). So I am facing the stress of finding another doctor if I want to save my cervix...I really like my doctor, she is very competent, but she is putting her preferences (she told me using the morcellator to chop up the uterus is "tedious") over what is probably best for me. She makes the point that there is no scientific evidence that one hysterectomy type is better than another, but I am not sure she really understands the role of upset pelvic nerves in IC.

Anyway, sorry for the long post...I am hoping to hear from other women who have had hysterectomies with IC and what type you had and if it made your IC worse.

Thanks so much in advance for your help. Susan

[cara1336]

I had a full vaginal hyster last year at age 22 (very depressing but have been blessed with one child) due to severe endometrosis which i thought was causing all my pain but of course it wasnt it was diff my IC. Right after my hyster i really didnt have any flares to irratation from surgery. Although i do believe i have more pain now due to ic since my hyster. Good Luck sorry im not much help

[Kirs10]

At the age of 33 I had vaginal hysterectomy. It was oine of the only surgeries that I don't regret. It wasn't really to bad of a recovery. I didn't get diagnosised with IC till after my hysterectomy, and my IC dr told me i should never have had one but I don't regret it at all.

[BrittanysDance]

I had a Lap with vag assist hysterctomy at the age of 30 and had everything taken out - and at that time, had had IC for quite a few years (severe case of IC as well), because I had endo and uterine fibroids. My uro/gyno also thought that if I had it, it would help my IC tremendously (it didnt...). I did have complications from my hysto but thats only because my uro/gyo ruptured my bladder with a laser, so my healing time was a bit longer just because of my bladder. Actual healing time vs. a full cut hip to hip is MUCH LESS, only about 3 weeks vs. 6-8 like when I had my c-section. I'd much rather to a lap-assist hysterectomy than any other way if possible. BUT know that your IC will not go away with a hysterctomy - and that either way, your bladder will get aggrevated for a time because they are prodding around in there, but it will eventually calm down.

Now - I do have a ? for you though. Why are you insisting on keeping your cervix if they are taking everything else? The risk of cervical cancer is so great, especially since if they are taking your ovaries and you have to go on HRT anyway - keeping your cervix just increases the chances of cervical cancer while on HRT or ERT. By removing the cervix you arent risking any type of nerve damage at all (if you're thinking sexual capacity) - because you still have the nerves attached to the vaginal cuff. When I am able to have sex with my husband, it is not diminished one bit because I am missing my cervix or any other organ, the feelings are all the same; the only trouble I have is because of the IC and vulvodynia, so we must be creative and very careful :). Other than that - no other issues. We do need to use a lubricant, but we needed to use that prior to the hysto as well due to having the IC too, now we just need more :D.

Also you still need to get a PAP smear once a year even after a full hysterectomy because you can still get cancer of the vaginal cuff or vaginal wall, so please make sure you do that too :) Too many woman think that when they get a hysterectomy and have everything taken out they dont need to have their yearly - this isnt true - you absolutely need to have that done. Some doctors may let you go every 2 years in between PAPS, but most will tell you to get it done yearly.

I hope this helps you somewhat in your decision. Talk to your doctor with any questions or concerns you have, he/she should be able to answer them fully.

Hugs,
Brittany

[Susan P.]

Thanks for the comments. Brittany, I have researched this thoroughly and there are major nerves that are disrupted when the cervix is removed. Since a major theory of IC is a neurogenic cause, I am afraid that any cumulative trauma to my pelvic region, esp if my cervix is removed, can increase my chronic pain.

Also, the cervix is important in vaginal lubrication, and being post-menopausal, I already have a big enough problem with that!

Lastly, the lifetime risk of cervical cancer in low risk women (like me, no history of abnormal pap or genital warts) is about 0.8%, which is the same lifetime risk of vaginal cancer (you are correct...even with a total hysterectomy, women still need yearly check-ups for that). I am not on HRT and do not plan on taking it (my sister had breast cancer), and HRT increases risk of endometrial cancer, not cervical cancer (I need to make sure my doc ablates the endometrium from the cervical canal). So that is not a concern for me.

I really appreciate hearing from you all that had the different types of hysterectomies...the common thread seems to be that some have trouble and some do not, no matter what type is done. Just two days ago I found a surgeon that is board certified in gynecologic laparoscopy and I am going to see her about the laparoscopic supracervical hysterectomy...my intuition tells me that is right for me.

Thanks again, S

[Golden Girl]

Your last post was excellent Susan. I know too much about this since my IC came on suddenly, seeminly out of nowhere after my total abdominal hysterectomy. The lifetime risk of cervical cancer in a woman past fifty is less than .08%. Vaginal cancer is so rare. Anybody who has read Master's & Johnson knows the cervix is involved in the "O" for some women as well as for sensation during sex.The only poblem I can think of for you if you keep your cervix is the risk of getting a fibroid on your cervix. That's not common either, particularly in a post menopausal age woman . There is information on the Interstitial Cystitis Association Website on hysterectomies. Your intuition is wise.

[Susan P.]

Oops, I mean 0.08% Golden Girl! Thanks! I knew that my number sounded high! S

[BrittanysDance]

Susan,

Many women still have normal orgasms and sex after having complete hysterctomies, again the nerves are still in the vaginal cuff and the "G Spot" isnt located on the cervix, its actually in the vaginal wall, up top and towards the back, which is where many orgasms are achieved if you're one of the lucky ones to attain orgasm that way :rolleyes:. Ahh..that ellusive G Spot LOL! My hubby still tries to find it...I think it should come with a map! :smile tee

Yes, vaginal cancer is rarer than other forms, however cancer/precancer of the vaginal CUFF is on the rise (following hysterecomy), and then there is cancer of the clitorus and other issues. I am only in my 40's and had my hysterectomy at the age of 30 - so I dont know the stats for women over 50, you didnt post your age. Many women with IC (and I'd venture most) regardless of peri or post menopause have issues with lubrication, its for some reason a huge issue, which is why most of use lubrications. I know after a hysterectomy, regardless if you keep your cervix or not - you will be even less lubricated than before because it is your ovaries that supply the hormones for lubrication, not the cervix, and that also diminishes with age as we all know.

It sounds like you have done all of your homework prior to posting and thats very good! :) I hope your surgery goes well and you no longer have any issues that your currently experiencing. I know how hard it can be to have fibroids and pelvic pain.

Hugs,
Brittany

[Golden Girl]

Susan you sound like a very informed,prepared patient. Hope is all goes well for you with the second MD. I had a fibroid watermelon sized(20 cm by 14 cm) plus multiple small ones and I haven't missed any for a moment! Some (who is going to do research to find out how many?) find sex "different", less intense or harder to respond to after a TAH(with removal of the cervix). Its easy to do a brief search on neuroanatomy of the cervix, vagina and vaginal cuff, the last two have very little in the way of nerves or feeling. It's why your Dr. can poke the cuff with a hemostat during a pelvic exam (to check its integrity) and you can't feel a thing!