Hysterectomy - No children. Has anyone else gone through this and how do they feel now?

Hi,

I'm 37 years old with no children. I've suffered with endo and adeno for the last 10 years with daily pain and periods that last for 2 weeks with only a 2 week break in between. My gynaecologist has been amazing. We've tried every possible treatment there is to reduce the pain and try to control my periods but nothing has worked. I'm now at the point of making the decision to have a hysterectomy as I have no other options open to me.

My Dr has sent me away for 6 weeks and asked me to do as much research as possible and to speak to as many people as I can so that I can make an informed decision.

I understand the physical impact and have done a lot of research on this so I would like to hear from people who have been through the same thing, how they feel post surgery and if they regret the decision they made?

It's a big decision for me as I will no longer be able to have my own children and I know there is always the option to foster or adopt. I'm just trying to understand the emotional impact this may have if I choose to go ahead with it.

Any help or advice would be much appreciated.

Thanks
Mel

I was a little older than you when I had mine, I was 40. Children we not an issue because my husband and I had decided we didn't want kids. I was bleeding constantly and in constant pain. I had endo, adeno, and a huge amounts of fibroids. It was a no brainer for me to decide to have one and my husband fully supported it, so did my Dr.

Since surgery I have defiantly felt so much better. No bleeding, no spotting, no pain. Our sex life improved 100 fold, we actually have one now. I have had no problem with orgasms. I actually have one much easier and faster and there is no pain afterwards. I kept my ovaries and they are working normally. My moods are so much better than before. I actually laugh more.

I had been on bc pills for 15 years straight with no breaks and they had sapped all my happiness out. I was constantly either in a terrible mood or flat. Most times I felt nothing because of the hormones. Coming off them, my mood lifted and I was able to feel again.

Because I have my ovaries I still get pms like I did before the pill. I get cravings, bloated feelings, cry easy. Thats ok because it is still 100 percent better than before surgery.

So thats how surgery was for me. if you want to know any specifics or have questions, please ask. I don't mind.

Hi MHann - I feel for you - this is a terrible decision to have to make.

Did you get a second opinion?

Has your doctor confirmed the diagnosis with MRI? Adeno is often misdiagnosed when only doing an ultrasound, but it's easy to see on MRI.

Also, from what I understand, a hyst will not necessarily resolve endo. My cousin had a hyst a few years ago due to endo and fibroids and it only took care of half of the problem. I would hate to see you still in pain and disappointed if surgery didn't resolve it.

Did you discuss an IUD as possible treatment for the heavy bleeding from adeno? It is supposed to really reduce or eliminate the flow quite quickly. Plus, you can have it removed when you want to start a family and your cycle returns immediately.

Uterine Artery Embolization has also been shown in studies to resolve adeno symptoms. It is primarily used for fibroid resolution, but there are clinical studies that show ~90% improvement in symptoms of adeno. While it's not recommended for people who still want to have kids, many people have gotten pregnant afterwards, so it is not a certain end to childbearing options.

Not sure if either of those options will work for endo. However, if you're conflicted about having a hyst, at least you could try other options first to see if there is enough improvement to justify keeping your uterus in case you decide to try for a family. You can always have a hyst, but you can never undo it.

Good luck and remember, only you can decide what is best for you! Never be afraid to get a second (or third or fourth!) opinion!

If you go to the 'Aching Heart' forum you will find many women posting regarding the emotional turmoil of having a hysterectomy especially when you have not had children. I was never able to have children so understand that pain. Fortunately, I never had to deal with endo or fibroids.

Is your gyn an endo specialist? Sounds like you have tried most all remedies, but that is a wise doctor to have you research before going ahead.

Hi!

I am 4 weeks post op total abdominal hysterectomy ovaries removed. 52 years old.

My husband and I didn't have children because he had custody of his young daughter when we married. I helped raise a niece and a great nephew so they were all the children we needed.

I agree on 2nd, 3rd and even 4th opinions. If it is at all possible to avoid a hysterectomy by less invasive means, find it.
Don't get me wrong, I am very happy with my decision as I would bleed for two weeks and start again about two weeks later.
Then I would skip a month and bleed for a month. My cycles were getting further and further apart and my last few were 6 months apart but I would bleed heavily for 6 weeks. It looked like there was no making it to full blow menopause. Then a pedunculated fibroid prolapsed through my cervix and I would bleed anytime I was on my feet very long. At this time we didn't know I also had adenomyosis as my first doctor just did an ultrasound.

Long story short, not I found a good doctor and after discussing my family history of female cancers and others ... I jumped off the deep end!

Good news I feel great! I am doing great! I am concerned about vaginal, bone and heart health and plan to address all of those with my doctors and change in lifestyle and diet.
I am a young, healthy 52 year old but not as healthy as I will be soon.
I am planning on Excercise and diet changes for the rest of my life to care for my body.

Like another sister said, you can always get a hysterectomy but once it's done ... It's done.

So research and talk to other doctors that can provide different alternatives or confirm what you and your doctor are discussing.

Good Luck!
Sharon

Hi Ladies,

Thank you so much for taking the time to reply and to share your experiences it really has helps me no end ��.

I've had a number of different opinions from different specialists but <> heads the endometriosis centre in North East England for BSGE and is renowned in his field as an endometriosis specialist an minimal access surgeon. When I say we have tried everything we really have, I've had 8 surgeries, an oophorectomy, prostap, zoladex, multiple different hormone treatments, where often times the side effects are as bad as the conditions themselves. I had an MRI 2 years ago which picked up the adeno but I'm booked in for another in the next week to see if it has worsened.

I'm on my second Mirena coil which I've had in for a year and a half but it hasn't managed to control my periods even slightly. He's even tried me on letrozole which is used in breast cancer patients to reduce oestrogen levels which is currently in trials but to no avail.

He's been great with me (as it's been pretty emotional) and he really wants to exhaust all possible avenues before resorting to a hysterectomy. It's been a long, tiring and quite frankly sole destroying path. After 10 debilitating years I think this might be the right course of action for me personally as it's effecting my work, social life and relationships.

The chances of stopping the pain with a hysterectomy in my case is about 90% as I have never had endo on my bowel thankfully. It will also stop my bleeding which will be a God send as I live with permanent iron deficiency anaemia. It's a tough choice to make but I do feel like I have tried everything I possibly can and I'm not sure given my situation and age that I could possibly conceive naturally or even carry a pregnancy to term.

Thank you again for all your advice and for sharing your stories as it helps to know there is support out there

Take care
Mel

It's a difficult and painful decision to make. I'm 45 and desperately wanted to have children. I only found out last year that I had severe endo and that both Fallopian tubes were full of fluid there by rendering me infertile. Even though I'm older, I still hoped for that miracle. I had pain but regular periods. Over the year the pain got worse to the point that I couldn't work. Every time I used my core muscles the pain would get really bad. I couldn't stand for more than a few seconds in one position and I had to pee about every 30 minutes. I had no choice but to have the hysterectomy. My ovaries were removed to prevent the endo from coming back. It's only been 6 weeks since the surgery and I feel so much better. I'm still mourning the loss of children and will for a long time to come.
You are miserable the way things are right now. It's a huge loss but you will physically feel so much better. im not trying to sway you one way or the other. It's totally up to you. We will be here for you no matter what.

If you absolutely have to have a hysterectomy you are strong and can get through it. However, if you can in any way spare your uterus, please try. I don't have kids and I had a hysterectomy, it is not just about not having kids. The uterus has ligaments that are attached to it. Once those are cut, it throws your body kinda out of order. So, don't so much think about the kids thing, that is where my mind was too, and that way of thinking does not put you first. Put yourself first, figure out what is best for you physically. You can adopt. I hope I have expressed warmth. I feel so bad for anyone going through this. But put yourself first. ((((hugs))))

If it is any help on the pelvic ligaments, I verified with my doctor at my one year check up. He said because I never was pregnant thereby the pelvis was never put under that stress, the chances are very slim of any pelvic floor weakness - even though i am fat. I have no weight restrictions either. I look at it as finally a positive note for never having been pregnant.

Also, since I had gone through menopause, as far as bone and heart health, I had gotten the greatest benefit from my ovaries. Yes, I still miss the little bit of hormones I was getting, but I do not suffer the health benefits near as much as younger women loosing them.

Ladies, it was around menopause time (52), when my periods stopped so I no longer had that monthly reminder I could never get pregnant, is when I finally started hurting less about it.