confused and scared

I've just found this site and am hoping to find some answers. I've been struggling with very heavy bleeding and sharp pains in my lower left side. I also had an extremely thick lining on my uterus picked up by ultrasound and my gyno after performing a D & C and hysteroscopy recommended trying the Mirena IUD which I've had in for the last 2 1/2 months. Unfortunately the pain is worse and I'm having bleeding or spotting daily but he said my only other alternative is a hysterectomy which I'm a bit scared of at this stage. He suggested I persevere with the Mirena a couple more months and if it doesn't help we'll have to go with the hysterectomy and he'd probably take out my left ovary at the same time because of the pain I get. He mentioned it could be done vaginally, through a bikini incision or by laparoscope. Which one is better? Also I have read that you can either have your cervix taken too or left in. I feel thoroughly confused about it all and would appreciate some advice. Thank you so much.
sunnyq

Hi Sunnyq,

It can be very scary deciding what to do. I was there too.

If I had a vote to your question, I would say a laparoscopic hyst, which is generally a less invasive hyst. Two types are the LAVH and the LSH, which I had. I am still very pleased with my surgery results!

Here is a Hyster Sisters link that goes over the ~different types~ of hysts. Just scroll down.

http://www.hystersisters.com/vb2/view_preop.htm

The link also includes questions to ask at pre-op appointments.

On the cervix, I kept mine, and again, I am still very pleased with my decision. In pre-op, My Dr. said he felt the cervix helps with future pelvic support and with sex. For me, both have been true.

I had my cervix cauterized during my hyst and I have not had a mini-period in post-op. If a Hyster Sister keeps one or both ovaries and the cervix in post-op, there is a chance of a mini-period. The two types of hysts that keep the cervix are the SAH (Subtotal Abdominal Hysterectomy) and the LSH. To be a candidate to keep my cervix, I had to have had normal pap smears for years and my cervix had to be sturdy.

Best wishes,

Mary

Hi sunnyq....

Isn't it a scarey feeling to be told "have a hyst"....as soon as I was told, I got that old UH OH feeling we all get with "bad news". But my doc had a very supportive nurse go over everything with me and explain why we were taking out EVERYTHING...ovaries and cervix, even though I've always had normal pap tests. The reason for taking my cervix at this time was that there would be no "reason" to worry about cervical cancer. Lame excuse maybe, but think about it...why would I want to go through all that worry and surgery again? Besides the older I get the harder it could be to recover quickly. I had the abdominal surgery....the first 2 weeks are the toughest. I've had friends who have had the vaginal...either way I'm told the first 2 weeks are the worst. My incision was a nuisance as far as clothing, bending etc, but I ordered the Swelly Belly Band and it helped ALOT esp when sitting or at the toilet.

Talk to people around you...I was surprised when I learned WHO had had WHAT surgery...they all said the same thing to me...You'll be glad you did it!!

where can i purchase the swelly belly band?

Thanks Mary and Coastal gal, I really appreciate your input. The thought of a hysterectomy just freaks me out, I'm not sure why, but it really does scare me. My mum died a couple of years ago and she had one but she never talked about it. I had read somewhere that having a tubal ligation (which I had after my last baby) that there's a high chance of having a hysterectomy in the years to come. I wish I'd known that before! Can you tell my what you mean by the first two weeks being the worst? Is it like the pain after a c-section? Do you feel any different physically not having a uterus? I'd need peace about it all if I'm to proceed. I don't like the Mirena much but I guess at least it's giving me time to get used to the idea of a hysterectomy. Also this may be a silly question, but I've had a laparoscopy before and it only left tiny little scars but how do they get the uterus out through such a small opening? I'm in Australia so the procedures might be slightly different here, but my doctor told me to expect to be in hospital about 5 days, is that right? Would I be restricted from driving and vacuuming etc for 6 weeks like I was after my c-sections? Thanks for being so patient with me.
sunnyq

Hi Sunnyq,

With my LSH, I had two small hip incisions and a belly button incision. From what I understand of the surgery, a tube was inserted into one of my hip incisions. A morcellator machine was used to basically puree my uterus and my uterus was brought out through the tube(s). I had no vaginal work done. My belly button incision was where the laparoscope camera went.

With a LAVH, there is still a laparoscope camera through the belly button but the uterus - with the cervix - is taken out via the vagina. With a LSH, the cervix is retained since there is no vaginal work.

With my LSH, I had surgery at an outpatient facility and I went home the same day. Some LSH and LAVH ladies stay overnight or for a couple of days in the hospital. With an abdominal surgery, it can be several days.

Here is an LSH link that goes over the surgery

http://www.goodgyn.com/lsh.html

I think with all us ladies we have to remember ~any~ type of hyst is major surgery. Even less invasive hysts. In my first two weeks post-op, I just got lots of R & R and watched t.v. on the couch. I could actually walk up and down the stairs in my house the day after surgery. Just slowly. I did a short trip to the DVD/video store on day 3 and the market on day 5. Did a walk around the neighborhood at day 10. At 2 weeks, I did return to work, with a Dr's okay. Just took it slow and delegated a lot. I got a greenlight for all activities at 6 weeks. With my LSH, I did not use a swelly band.

On the cervical cancer question, my Dr. did discuss that with me. He said that less than 3% of women get cervical cancer, which I thought was good odds for me. Also, from being on Hyster Sisters, I have read that the majority of ladies with cervical cancer also have a HPV. And, this last summer, the gyneo medical world announced that they are having successful tests with a cervical cancer drug that could be on the market in a few years. From what I read, it has over a 75% success rate so far. So good news there.

Best wishes. When it comes down to the type of surgery and the cervix, choose what is best for you.

Mary

Thanks again Mary. That was very informative. From what I've researched so far I think if I end up having a hysterectomy I'll opt for the LSH too. It seems to have the quickest recovery time which with having children to care for I can't spend too much time recovering. Have you noticed any mood changes or aging or have you found that the ovaries still do their job well even without the uterus? What kind of anaesthetic did you have? Any regrets or things you'd have done differently?
sunnyq

To anyone who can answer this...
I am scheduled for a hysterectomy on 27 Feb. My pre-op appt with my ob dr. is scheduled for the 23rd. We reallydidnt discuss what TYPE of hyster. I will have, and after researching the different kinds, I think I would much prefer to keep my cervix, but how do I request that? just simply ask?? I am having a hysterectomy becuase of diag. with adneomyosis - painful! periods, blood clots, ovary pain - left side - but he did say I would keep my ovaries...so, I am confused. He also said he would do a "laproscopically assisted hyster" - after reading the diff. types, I am thinking he is planning to do the LAVH - but it looks like the take the cervix with that one. I think I want to keep my cervix! sexual "ability" is VERY important to me! any suggestions?? thank you. I LOVE this website.
loislane97

sunnyq - he never discussed ablation with you? If you don't have submucosal fibroids, adeno or endo - it might be a less traumatic option.

Hi Sunnyq,

In answer to your LSH questions, my ovaries are still working great almost two years post-op. I get some monthly PMS which consists of some breast tenderness and mild irritability. Just no period. For me personally, I have not noticed more aging. I was 46 at the time of my hyst and I am 48 now. My skin feels good and I have not put on any weight.

On my anesthesia, boy...not sure. All I know I was talking to my DH in pre-surgery and something was put in my IV, and I was bye-bye. Then I woke up in recovery. And any regrets with my LSH?? No...none for me. My LSH gave me my quality of life back. One of the best things I ever did for my long term health. The experience also taught me to ask questions and do my research when it comes to Drs. I think my only regret in post-op was I overdid it a few times. Like I went back to the gym too early and I did some gardening at week 3 that was way too much. Otherwise, my LSH recovery was textbook.

Best wishes. Just know you will make the right choice for yourself. Being on Hyster Sisters is a great start. A wonderful bunch of ladies!!