Help I'm scared

Hello all...I just joined because I am due for my hysterectomy in about 30 days. I have fibroids, cysts and awful menstrual cycles. On top of that I have tested positive for Lynch syndrome or HNCPP which is a mutated gene that causes colon, ovarian and uterine or endometrial cancer. Through all of this my dr's and I have decided a hysterectomy is the right choice. I am 34 yo and am so scared that my sex life will not be the same. I am multi-orgasmic (clitorally) and can have clitoral and vaginal orgasms. My husband is very supportive and agrees that with the cancer risk and my pain monthly a hysterectomy is in order. Anyone who can give some advice and support I will gladly accept. I still have not decided if I should keep my cervix or not but uterus, ovaries, and tubes must go so I kind of feel with the risk might as well do the cervix too but not if its gonna ruin my sex life. HELP im petrified.

Hi csmtlygurl,
I'm sure many others will respond that have more symptoms closer to yours..and please keep reading through the forums..you may find answers to some of your questions.

I had an LAVH on May 10th; my uterus and cervix were removed and I now have a vaginal cuff. My need for a hysterectomy was due to fibroids, cysts, an enlarged uterus and heavy, heavy bleeding. No BC would stop it and I became anemic as my hemoglobin dropped so low. My dr. told me "hysterectomy or bleed to death"

I also pre-surgery, when I was able to have sex, LOVED to have sex and was multi-orgasmic, and although I am not cleared for sex yet, I've been experiencing momens of "intense libido"..to which other sisters have gave positive responses that sex will be the same for both you and your partner..and in some cases, it gets better!

Hey csmtlygurl

I had huge fibroids and terrible periods and associated anemia. I did choose to keep my cervix because I was afraid of the vaginal cuff, thought sex would be better, and that keeping it may prevent other stuff from falling down after surgery. I'm now 3+ months post op, and so far I'm happy about my choice to keep my cervix. Sex is as good as before. I had zero post op bleeding.

My only thought about you keeping your cervix would be that the gene that you have, if it causes uterine cancer, could similiarly cause cancer in your cervix. The cervix is the bottom part of the uterus, not a separate organ. Talk to your doctors about this. Also, if you keep your cervix, you can't have hysterectomy vaginally. It would have to be a laparascope assisted, abdominal or davinchi robot procedure.

I suspect that perhaps more and more women are opting to keep their cervixes, but as yet there are very few published studies that prove or disprove the advantages or disadvantages of keeping it.

Whatever you decide, best of luck to you! This website saved my sanity.

Hi csmtlygurl,

I know you're scared... but this is AWESOME! Thank goodness you are having your problems "removed". When I was 26 years old, I started having horrible ovarian cysts on my left ovary. They tried the BC pills, and 3 emergency laparoscopies up to age 34 to lance the cysts. Finally, at age 40 I found a doc who would remove the left ovary. I woke up feeling no pain at all for the first time in 8 years. Now I'm 50. The past 5 years (age 45 to 50) I have had HORRIBLE fibroid tumors, huge cysts, endometriosis, and terrible bleeding during all of my irregular periods. My husband is a Marine and we were moved to Hawaii last year. I was so scared that I would not find competant healthcare on this island (I NEVER use military doctors, only civilian docs and hospitals). I found the awesome < > in Honolulu. Told him my history, and provided previous doc notes over the years to him. He did a D & C to make sure that I was a candidate for the DaVinci Hysterectomy (totally awesome and less invasive). If they found cancer from the D&C path, then I could not have it. But I was clear. (even though cancer runs in my family). The operation was at 8am. I was discharged that same day just 7 hours later.... walking out like a champ! I cooked dinner that night and got the best night's sleep in 5 years. I had the cervix and uterus removed. (But kept my right ovary - left was taken 10 years ago, as I mentioned.) My Ut was enlarged and had several fibroids and problems. He even found that a small section of my bowel was adheased (adhesion) to my uterus muscle. THAT was causing all of that bleeding. Anyway, to tell you the truth, 5 weeks post-op, I feel more like a woman now than I have in 5 years. It is really difficult to have an awesome and handsome husband (as many Marines are!) and not be able to enjoy sex because of the horrible pain I have felt in the past. We are BOTH so looking forward to sex again in about a month. I don't know what type of Hyst you're having, but when you find an awesome, well qualified doctor, an awesome hospital with a great staff (as I did at Queens Med Center), the stars seem aligned and you are happy as can be. I did read on here where there were other Davinci Hysterectomies (robot assisted), that had a terrible experience. But after reading about, I realized that it was the idot hospital staff that made most of her experience so bad. And I'm not so sure her doc was listening to her either. But that's why you need to be as diligent looking for the right doctor and hospital as you would in buying a house!

By my third day post-op, I was grocery shopping. A week and a half later, I was out mowing the lawn. (Although I don't suggest that for anyone else... it will depend on your own health and recovery.) I think what makes a hysterectomy successful (besides the right type of procedure, the right doc and the right hospital), is the attitude. I couldn't WAIT to get rid of my girl parts who had failed me over the years. They stole my happiness on so many occasions because I felt so physically bad. They ruined my clothes with blood, they stripped me of the feeling that I would ever feel normal again. But you will! I woke up from my Hyst grinning like a cat! I felt NO pain, and was so excited that my bad days were over. I've even lost 10 pounds since the hyst. And that's not with changing eating or exercise habits.

So relax and know that the bad parts are going away soon. We're all here for you. This is going to be a NEW START for you! Look forward to it!