dVH/RALH: Upcoming hysterectomy: Cervix -keep it or not?

Hello - I am scheduled for the da Vinci single incision hysterectomy on February 11, 2015. I'll start with this: I AM TERRIFIED. Long story made short, I have a "failed ablation" - my cervix has "stenosis" causing my monthly period to VERY SLOWLY leak out over about a 25 day period - just in time for my next period to start. It smells horrible (old blood), is extremely painful (trapped blood) and is just miserable. I finally have decided that this is no way to live. My question is this: this morning I was supposed to have an endometrial biopsy. He couldn't complete it because of the stenosis in the cervix. The surgeon and I discussed this and he sent me away saying, "now when I see you on the day before your surgery I need to know if you want your cervix removed or not". How am I supposed to figure this one out? He feels like I should remove it. From everything I have read it seems like most think it is best to KEEP the cervix if possible. Has anyone else had to make this decision? I would love to know any and all thoughts you girls might have for me. As a side note - I cannot tell you how incredible this site has been for me - especially reading the posts from those who have done this and survived. Thank you!!

I didn't exactly have to make a decision; my doctor wanted me to keep my cervix if it was healthy (no fibroids growing on it). That's one reason I had abdominal surgery, so she could see everything clearly. If your cervix is healthy, I'd suggest keeping it; I don't like the idea of removing healthy body parts just because. There are downsides to keeping your cervix: continuing to get pap smears and the "possibility" of mini periods, if you have one or both ovaries as well.

There are no hard and fast numbers on how many women get mini periods; I've seen percentages from 7-20%. From everything I've read on them, most women experience little more than a "wipe and go" deal, lasting anywhere from one day to a few days. Some women don't even need a panty liner. If that's a dealbreaker for you, then yes, the cervix should go. There's no consensus on whether the cervix provides pelvic floor support but my doctor believes it, and that's another reason she didn't want to remove it. I am glad I have my cervix and not a vaginal cuff, only because of the rare possibility of problems some women have with the cuff. At 6 months post-op today, I haven't had any mini periods, and don't expect to get them (my doctor said she cauterized well, and I guess she did).

Sometimes there are problems with the cervix, is it tender for you ? Mine was full of cysts and I had adenomyosis with alot of pain and fibroids as well, which I was told adeno and fibroids can be in the cervix as well, so sometimes it's removed. Im doing fine without mine and no more pain. It's an individual case thing. I sure wished there were more clear cut answers for you. Have you had bad paps or pain with intercourse, sometimes those are deciding factors as well.

I am normally a vocal advocate for keeping your cervix. However, only if your cervix is normal and healthy, and you have no risk factors.

I think this needs to be decided by an in-depth, serious discussion with your surgeon. You need to know what additional risk-factors or problems you may be facing if you were to keep a cervix with stenosis. It sounds like he/she should have provided you with more information already.

Hi
My dr and I decided to remove it. No need to keep it since my family has a long history of cancer. However some friends have had it removed evfn when there was no family hystory of cancer.

It is such a big decision and so many factors go into it and each case is unique and different so it really is only a decision you can/should make not just your surgeon...
I will share my story/experience with you to see if it helps in your information gathering process.
But I have to go pick up my 5 year old from school at the moment, so I will write it out after that...

My friend had a hysterectomy and kept hers. She has a full blown period every month. When it was decided that I needed a hysterectomy my Dr. told me he would take my cervix. I was okay with that decision. I did not want any more periods at all. I started having them when I was 10 years old and I turned 48 a month before my surgery. There were some issues with my cervix that showed up on my pathology report. No regrets. Also, I really can't tell it's gone. It has not affected my sex life either. Although it did take a few months to get it back.

I had mine removed without a second thought. I'm not sexually active, and it would remove any chance of a mini-period plus keep me from ever having to have a pap smear EVER AGAIN FOR THE REST OF MY LIFE. (I have no cancer concerns and my cervix wasn't HPV+.) Pap smears have always been horrifically painful to impossible for me for my whole life; at the age of 47 -- my age at the time of my hysterectomy -- I had had all of ONE successful one, and it was utterly miserable. I always say that when my surgeon told me removing my cervix would keep me from having to have a pap, I almost grabbed a box knife and asked her to talk me through it over the phone.

Now, some women prefer to keep it for a variety of reasons:

1) No vaginal cuff recovery, so they don't have to wait so long to get back to having sex.
2) They may also dislike the idea of the vagina sort of dead-ending, like a "road to nowhere."
3) They may enjoy the sensation of having it bumped during sex.

Some women who prefer to have it out do so because:

1) Like me, they have painful pap smears.
2) They may have an inflamed cervix or one filled with adenomyosis, which makes it extremely painful when bumped during sex.
3) They may test positive for HPV and want it gone so they don't have to worry about cervical cancer.
4) They may not want to run the chance of even a mini-period; if you leave the cervix in, and there is ANY endometrium attached to what they leave in, it can and will continue to bleed once a month. Usually this isn't much blood, but it can require a pantyliner.

So it all depends. Many women who have it out don't miss it, and if it causes pain during sex, they may find themselves enjoying sex for the first time in a while. Others hold onto it and are very happy with their decision. Personally, I am delighted to have the rotten little thing GONE.

I do think sex is more comfy without it. Mine was always getting bumped. I also did not want to have to go thru another future surgery, if what was left in there contained adeno or fibroids. I just smile now when a 'period time' comes and even wear white. so happy no more painful periods.....

So, this is a LONG post, but the decision - about removing the whole Uterus, (Total Hyst) or amputating the uterus at the cervical portion (Subtotal/Partial Hyst) - can be difficult, if you have an otherwise seemingly healthy cervix (and a choice!)

There are so many considerations and no clear consensus among the medical community with different doctors having varied opinions based on their experiences, education, personal bias, etc.

So, it really depends on your specific needs and goals after surgery, both sexually and otherwise... plus your particular body structure and how you feel/experience things.

I highly recommend getting at LEAST 3 different opinions from very different doctors in different practices.
Also talk to some women in your life who you know and trust who have been through Hysterectomy.

I am by no means an expert and I am sure there is more to consider than what I will mention here, but if it helps, I will share my experience…

I was very torn about this decision and went back & forth about it for a while. Very hard to know (without a crystal ball! Haha) how it would turn out after surgery?

My decision making process went like this…When I learned that needed a hysterectomy, I first consulted with OB/GYN that delivered my last baby. I also consulted (and even scheduled surgery) with a regular Gyn who specializes in a more functional/holistic "Total Woman Care"...but THEN my 3rd consultation was with a Gynecologic/Oncologist Surgeon - because there was small risk of cancer in my case, due to elevated CA125 and other factors.

I actually felt the most confident and comfortable with the Gyn/Onc so I decided to have the surgery with him. He was super kind, caring & knowledgeable. Humble, yet an expert-level surgeon with lots of experience and a wonderful reputation (who also teaches surgery so I felt he was up on latest, best techniques).
It just "felt right" when I met with him. It's important to find a doctor you trust.
I still had reservations about the surgery itself and wanted to NOT have it at all, of course - but that was not possible with the health problems I was having so at least I felt confident in my surgeon.

The 1st doctor gave limited options really, just basically "this is the way I do it" which was vaginally and no keeping cervix, and that's what will happen, end of story… felt like a more "old school" demeanor to me - plus I don't believe one size fits all!

The 2nd doctor offered several options, but no strong opinions or information on what was best - which was freeing, yet left me feeling unconfident, like maybe she was lacking experience and expertise?

The 3rd doctor, the Gyn/Onc was my favorite - offered excellent options plus well-reasoned recommendations and opinions on what was best... but still left the ultimate decision up to the patient and respects the patient's needs & desires.

So my 2 best surgical options to decide between with my chosen surgeon were:

#1 Total Hysterectomy leaving ovaries (if healthy) using Davinci method for extra precision & quick recovery.

#2 Subtotal Hysterectomy, leaving cervical portion of uterus, leaving ovaries (if healthy) using the Davinci Laparoscopic tools but without vaginal extraction, instead adding another (slighter larger) small abdominal incision down low to remove the uterus intact (my Gyn/Onc is against Morcellation, and never has used it, never will).

So, it was a hard choice, I talked with my husband at length about the options, we prayed about it, I talked to my sister, my mother, friends, all the while reading as much as I could find about it.
I also happened to have 3 women of different ages all very close family & friends whom I have known for years whom have all been through hysterectomy…in 3 different decades… long ago and very recently…and none of them kept their cervix and all were happy with the decision and said nothing felt different to them, sexually or otherwise.

So, after all that, I ultimately opted to have Option #1 - the total uterus removed during the hysterectomy and not keep the cervix mainly based on:

- eliminating the risk of cervical cancer
- eliminating the possibility of continuing to have bleeding (even heavy bleeding is possible from cervix)
- eliminating risk of developing problems (like persistent pain) in the cervical stump
- reassurance from the surgeon that it wouldn't affect structural stability or increase risk of prolaspe
- eliminating the risk of complicated future surgery if cervical stump has to be removed later, for various problems such as dysplasia, cancer, bleeding, pain, etc, (it is a more difficult surgery later, risk of bladder injury because bladder becomes adhered to the stump site after hysterectomy).

Now to be fair, my surgeon is an expert-level specialist so because of that he gets more special needs patients referred to him…more complicated and higher risk gyn cases…SO this causes him to witness a disproportional amount of what goes wrong... as opposed to a normal doctor who sees mostly normal problem-free recoveries which is the majority outcome for most women, thankfully!!

So, his experience is with having other doctors refer their patients over to him for difficult cervical stump removals (due to other problems that developed with cervix after hyst) so he personally recommends removal at time of hyst (since is a more complicated riskier surgery to do later).
But he still does leave the cervical portion (if it is healthy) if the patient feels strongly about it - so he was not totally against keeping it in all cases, just cautious.

Another important factor in my decision was the health of my cervix. While I was, thankfully, HPV negative and so a good candidate for keeping cervix…at the same time I did have a history of recurring cervical polyps, as well as some past dysplasia instances on my pap tests…so I was ready to eliminate those problems and did not want to go through the ordeal of hysterectomy and then still have bleeding or pain afterward because I left some problems behind.

A final factor in my decision was that there was a cancer risk identified in my case and although it was a small risk, there is no way to know for sure until the pathology comes back after surgery. So, my surgeon explained that a Subtotal Hysterectomy necessitates amputating the uterus to leave the cervical portion which would involve cutting through the organ which contains the (potentially cancerous) tumors, which would involve a small risk of spreading those (potentially cancerous) cells. So, even though it was a small risk - it was safer, from a potential cancer perspective, to remove the uterus intact without cutting into it.
My husband and I decided to play it as safe as possible so that there would be no regrets if, by small chance, cancer was found. My life trumped all other concerns in the end.

So how do I feel now? without my cervix? Was it the right choice?

Well, thankfully I did NOT have cancer so that's a huge relief that the uterine tumors and ovarian mass and cervical polyps were all benign. I got to keep my left ovary so that was a blessing as well for my hormone needs.
So, that potential risk of cancer was avoided completely and was not an issue after all. So grateful for that!!!
However, the other reasons for the decision remain valid since removing the cervix eliminates them from being able to happen, so I will never know if they would have happened if I kept the cervix, or if I would have continued to have problems but I am confident that I made the right decision for my particular case.

What I DO know is that I had a really great surgery experience in every aspect, and a quick, completely uncomplicated recovery with no bleeding or spotting and wonderful healing - which was not extremely painful at all, never needed anything but ibuprofen and heating pad after the hospital. Praise God!

And I LOVE not having the terrible heavy bleeding and anemia anymore (and not bleeding at all any more!)
I love how much more energy and stamina I have now. I can't believe how much better I feel already…and I am still only 2 months past surgery and not even as totally fully recovered as I will be in 6 months, or even more so a year out!
So, I am very happy and satisfied with the hysterectomy.

I have to say though, it IS different for me without the cervix.
It does NOT feel exactly the same for me (sexually) so I guess I am in the minority there.
BUT, it does still feel great! Just a different great!! Sex is still very enjoyable (and so is orgasm!) but it definitely feels "different" during intercourse. So, I guess I was one of those women who felt the "cervical bumping" and stimulation there.
It is a case of "you don't know what you've got, until it's gone"? But, I don’t want to give the wrong impression that it's a big deal or a problem really - because sex is still awesome! I think I just need to get used to the new way it feels.
Plus, I have only just been cleared for sex within the past couple weeks so I am still adjusting. Because after all these many, many years with my husband, I was very used to a certain feeling and a very specific sexual experience - and so it's not the same as before for me but I still love it.

Now, my hubby has NOT said that it feels different to him - but I think it must?? Because if I feel the absence of the cervical "bumping" that used to happen…then he must notice he is no longer bumping into it?? Of course as the owner of the sensitive cervix I am sure it was always much more noticeable to me!! Anyway, we will discuss it in depth eventually, but all seems great so far and feels great, so I don’t want to cause him any concerns if he has none.

And we are both loving the freedom and the carefree and spontaneous new aspect of our sex life - not having to work around the long, heavy, unpredictable bleeding nor the spotting after sex (probably from the cervical polyps) nor worrying about birth control!! Yay!!

So, just know going in that it can or may feel a bit different.. so that you are prepared - that helps. I think I was a bit surprised because my expectation was that everything would feel the same... like it did for the women I talked to. But in hindsight I realize that their bodies are made differently and actually 2 of those women had hysterectomies that were in part for painful sex problems due to endometriosis and cervical spasms, so that makes a difference too.

Bottom Line...Make the best decision you can for your particular needs and have peace about it! If you have a healthy cervix and no pain during sex and no cancer risk.. Consider keeping your cervix if it's important to you, so there is minimal change for you but know that change isn't bad just different
Hope this helpful!