Upcoming December hysterectomy: Advice needed please ��

Hi, sorry if this post ends up with me rambling but I've got so many worries that I don't know where to start.

At the beginning of the month I underwent a laparoscopy to decide on treatment for my recently diagnosed endometriosis, adenomyosis and fibroids. The procedure didn't go to plan as at the start of the operation I had an unexpected cardiac arrest. I was then transferred to a cardiac ward where I suffered a further two cardiac arrests before being sent home a week later to recover. Whilst in the recovery room the consultant visited and said that although the procedure was cut short he'd seen enough to decide that the best option would be a complete abdominal hysterectomy. I was still dazed from the anaesthetic and my cardiac ordeal so I didn't ask many questions.

I've now received a pre op appointment for two week's time and a surgery date for mid December... I really don't want to have it done but I don't know if I am thinking rationally! So I guess my reason for posting here is so that you can advise me as neutrals with experience!

Firstly, I don't trust the consultant. I feel like a hysterectomy is what is easiest for him to do instead of what is best for me. Surely there must be ways of removing/ reducing my pain without taking away all of my reproductive organs?

I'm worried about taking HRT. My mum is Stage 4 secondary breast cancer and was told that her cancer was hormone dependant - so I'm worried about taking artificial hormones as I've read that it can put you at risk if you have a family history. I mentioned this to the consultant but he said it only applied to older women - I can't find any literature to put my mind at ease!

On the subject of HRT I am worried about surgical menopause as I don't know if I can cope with the side effects. Thinning hair, night sweats etc.. I am also worried about how my sex life will be affected because I've read so many things online that have me fearing that I'll be left with no drive, no feeling, an inability to orgasm and a vagina that is effectively a gaping hole. I know that sex is not the most important thing in the world if I have my health but I don't want to think that my sex life will end at 32!

Then there's the weight gain issue... I've spent my entire adult life on a diet. Over the past three years I have gained 3 stone without a change in diet or exercise. I am worried that I will get even bigger after a hysterectomy because I've read that weight gain is inevitable and weightless becomes near impossible! If I must have the surgery I want to lost at least a stone beforehand because I am certain that the wound will be so much more painful if my stomach is hanging over it!

One thing that I am certain of is that I am not having the surgery on the date they have scheduled it! There is not any time of the year that I will be able to not drive for longer than a week, but over the Christmas period I am twice as busy!

I think if they had offered me keyhole surgery I might have not been so worried but nothing about this procedure seems a good idea :/ The only thing that I am clinging to is I've been told that my uterus is enlarged to one that is 4 months pregnant, so perhaps without it my stomach would be flatter?

I'm sorry for the long, depressing post but no one else seems to be listening! Everyone just says, "oh no periods - I'd love a hysterectomy!"

You have a lot going on here! The first thing I noticed was that you live someplace where you have a "consultant," which means not Canada and not the States. I don't know if it's possible to get a second opinion where you live? This is a common thing to do in the States, but it's quite difficult in Canada. If you can, you should because you don't trust your current consultant.

The next thing I noticed was the endometriosis. My surgery was for cancer and I don't know a lot about endometriosis personally, but everything I've read says that if your surgeon doesn't get absolutely *all* the implants, the endometriosis may continue to spread. It's important to get a surgeon who has a lot of experience in operating for endometriosis.

We have an Endometriosis Support forum and a whole slew of articles about endometriosis, including:
Are There Options Besides a Hysterectomy to Treat Endometriosis? and
Must I Have an Oophorectomy If I Have Endometriosis?

I would suggest talking with an oncologist - perhaps your mother's oncologist - about your breast cancer risks and perhaps also having genetic testing.

Re: "gaping hole" vagina - er, no. If your cervix has to be removed, the end of your vagina is sewn up so that there is no gaping hole. This is referred to as the "vaginal cuff." I have one myself. :-) The change to the length of the vagina is minimal.

Weight gain is not at all a given. It's certainly not "inevitable" - I haven't gained weight since my hysterectomy and oophorectomy five years ago. The same rules apply after surgery as before: eat healthy, keep track of what you eat, get as much physical activity as you can.

Driving after surgery: not everyone is able to drive within a week after surgery. You can't drive if you're still on narcotics. You also can't drive unless you're able to operate the vehicle without pain *and* to react in an emergency without pain. It's not just about your own safety - it's about the safety of all the other drivers, pedestrians, etc. around your car. You might want to read Driving After Hysterectomy.

There's no doubt it that having a hysterectomy is major surgery and that you should exhaust all other options first! Anyone who says they'd "love" a hysterectomy because then they wouldn't have periods is a fool. You also need a doctor whom you can trust and who has lots of experience in dealing with endometriosis.

For me getting to the point of accepting I would need a total hysterectomy was a 5 month process. From reporting to my dr my first symptom to meeting my Oncologist/gyn.
After meeting her and listening to her explain everything I felt very confident with her in charge of my care.
If you do not have that going in ...get another dr.
Don't worry about your "busy" time worry about your health. If you don't have that what can you really do? Think about that.
Take care of you first.
Good Luck with your journey.

You really have a lot to take in from your story. I would start with the second opinion. First you need to really trust your doctor & feel comfortable with the treatment plan, whatever it is. Also I would want to know more about the cardiac arrest since you'll have to be put out for a hysterectomy as well. That's scary stuff.

Idk what your current symptoms are but postponing until you have a better understanding & feel confidant in your decision is okay if it's not an emergency. I postponed mine 2 weeks just so I could go to concerts.

I have endometriosis & am just about 4 weeks post op. They discovered quite a bit in there during surgery & for me, it was the right call. They also had to burn what was in there out to be sure there was none remaining because yes, it can create problems if left even without your lady bits. I was on lupron for 8 years prior to surgery so I've gone through a form of "menopause". My worst problems were hot flashes & night sweats but my Dr kept those under control. There is a difference I believe in whether you keep your ovaries (I'll save that topic for someone more knowledgeable, along with hrt since I shouldn't need that & haven't done enough research).

As for this being "easiest" vs "best". None of the options are easy. My choices for endo besides surgery were going to be a lot harder. Pain management & birth control pills & a lot of trial & error while effecting my quality of life in the meantime. And I would have ended up in the same place down the road.

I'm not far enough out in recovery to go into my sex life after but what I can tell you is my Vagina is not a gaping hole (it gets sewed shut during surgery & I've had no problems in the area so far), I still have my libido as my husband & I have already been "messing around" with a lot of hard to manage limitations so my feelings are once I'm healed it'll be back to normal although may be different.

Ah... Weight gain. I've lost a few lbs so far with a decreased appetite post op. I'm getting it back slowly & trying to keep from eating to much to prevent unhealthy weight gain in the future. But I think it's the same post op as pre op. Be healthy & exercise. But it shouldn't stop you from doing a surgery that can help you in the long run.

I haven't driven but one time around the block in a month so be prepared. It may take longer to do some things. It's a major surgery & you need time to heal properly. A few weeks or months now that save you problems down the road is worth it. As for the people who say they'd love a hysterectomy, they have no idea what it's like to be in our place with actual health problems & constant pain.

I hope you find a resolution that's right for you & keep us updated or just stop in to rant if you need to.

Hi, i guess my question is, is your heart up for another surgery so soon?
So sorry to hear what happenee, you have a lot to think about.
I have stage IV endo and just had my abdominal hysterectomy last week.
There sre other options like Lupron and ablation. Hugs.

As far as I know none of your diagnoses are dangerous, just very painful. Even before I got diagnosed with endo I wanted a hysterectomy but I had to fight for it because no dr would give it to me. Hysterectomy is major, permanent surgery. I'm of the opinion that if your life isn't otherwise endangered, you shouldn't have a hysterectomy unless you're sure it's right for you.
I'm not sure what exactly your symptoms are. They have medicines to control bleeding. Lupron will stop estrogen production and kill the endo. I personally was allergic to it so I can't attest to whether it helped with pain but it will drop you into menopause while you're on it. My pain was primarily managed by painkillers which isn't great. If pelvic pain is the issue I've heard of people using medicines like lyrica but I don't know how effective that was.
I've heard that there is an increased risk with hormones, but any time there's a family history you're going to have an increased risk of getting it. It'll be up to you to weigh risk vs reward. Also keep in mind there's no rule that says you have to start it immediately. I didn't start hrt until two weeks post op, you can give yourself some time to see if you even need it.
I'm 27 so surgical menopause was a huge concern for me as well by two days out I was full blown. I haven't seen any significant change in sexual desire, sensation, or orgasm (though Im still easing back into penetration). The hot flashes and night sweats suck no lie but estroven and similar otc things help a lot.
As to the weight issue, not a lot of medical providers tell patients this but endo can make you look up to six months pregnant due to bloating. I made people's jaws drop by how flat my stomach was after the swelling went down just from removing the uterus. I'm down nearly ten pounds six weeks out with minimal exercise though I have been eating better (no more PMS cravings makes that easier)
I hope this is helpful...don't let them push you into this if it's not what you want though! And that's coming from someone who wanted one even before I started having issues so I'm super biased lol

So sorry for all you're going through. It's been a rough road for you.

Please, start with a cardiology consult/eval. It may not be advisable to put your heart through the stress of another surgery so soon after your cardiac arrest.

Then, get a second opinion (and a third, if you need it) regarding the surgery itself. It is important that you can trust your doctor and his/her advice. Did he say why everything needs to be removed? Did he discuss with you your alternatives to surgery and with surgery? Even if he did, you weren't in shape to take it all in and, at the minimum, need him to explain his reasoning. Ask for a copy of the operative report. Then, armed with that information, get another opinion.

The other ladies on the thread are right on about a number of issues you brought up. As for sex life after hysterectomy with oophorectomy, here's another look at the results on the other side: https://www.hystersisters.com/vb2/sh...&highlight=sex

Good luck on your quest and please let us know what you decide.