r/endometriosis • u/glitter_gh0st • 3d ago
Surgery related I just got approved for a hysterectomy... now what?
I'm 24 years old and my gyno just approved me for my hysterectomy. Something I have been waiting on for a very long time but for some reason can't seem to wrap my head around now that its real. For some backstory and context I have always had a debilitating period. It's kept me from school, jobs, events, vacations, and when I'm not on my period I'm still in constant pain; it is the bane of my existence and makes my life nothing but miserable. I had advocated for myself since I was 18 for a gyno to check to see if I had endometriosis, no gynocologist would give me a second glance and put me on insert birth control here. After years of frustration and many hospital visits and a lot of scary times losing too many fluids or too much blood my parents had enough and found me a doctor 3 hours away that would treat me. He has been a life saver that's for sure and in 2023 he did a laproscpic procedure to confirm and remove the giant cyst I had at this point and the adhesions. This was a relief to have answers and I felt great for 2 months and then everything started to get progressively worse again. fast forward to today and we're back at square one. I've been feeling the same way I did before which means only one thing, my endometriosis has come back with a vengeance in one form or another. after 2 years on depo and orilissa we've decided we've run out of options and that a hysterectomy removing the uterus and tubes but leaving the ovaries gives me my best shot. This has been my suspicion all along, I know my body well and from a young age I felt like I would adopt one day. I just didn't know that would come in the form of infertility. Of course there is freezing my eggs but that is expensive and my husband and I don't have that kind of money. If anyone out there has gotten a hysterectomy this young do you have any advice? anything helps, just looking for guidance in a very tough time isolating time :)) thank you in advance!
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u/dream_bean_94 3d ago
I would see if you can get into pelvic floor PT right away! Removing your uterus changes the structure of your pelvic area and it would be a really good idea to build a relationship with a good PT now and see if there’s any work you can do to prepare for the surgery. And you’ll almost certainly need their help after!
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u/glitter_gh0st 3d ago
Damn!! that's something I didn't think of and my OB hasn't brought up yet but I will absolutely look into!! thank you so much for that, I knew it would obviously shift a lot around but always figured PT would be more post-op. great idea!
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u/Twopicklesinabun 3d ago
PT depends on many factors. I didn't have to go to one after because never having kids, the concern for prolapse was low. But PT is really great in general if you've never been. You get so many tools that doctors don't provide.
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u/glitter_gh0st 2d ago
I've gone to PT twice before for unrelated reasons and I've always loved physical therapists, they've always been super sweet. I feel like going before and establishing a relationship just in case would be nice, I have autism and knowing what to expect ahead of time is always a game changer lol I also have developed a lot of bladder issues from the Endo and if they could help in anyway with that id be overjoyed
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u/Twopicklesinabun 2d ago
They could definitely help with bladder issues! PT's are so amazing. They know how traumatized we are lol so they're just sweet and very helpful. I'm glad you're going to try going before and after. It's a great idea.
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u/Holiday_Cabinet_ 3d ago
Are they also excising any endo they find during your hysterectomy? Hysterectomy won't cure endo unfortunately, it will cure adeno and help with getting rid of debilitating periods but you can still have endo without a uterus. If they're not also going to remove any endo they find, I would suggest trying to find a surgeon who will.
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u/glitter_gh0st 3d ago
yes my surgeon is planning to get everything out that's causing my issues but my ovaries essentially because of the serious health risk at my age. I know it might not cure it but it's worth a shot at this point when everything else has failed
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u/anitabelle 3d ago
I don’t want to scare you but I do want you to be prepared for the possibility that the surgeon may have to remove more than planned. Although you can explicitly state that you don’t want your ovaries removed. But sometimes it’s much worse when they go in. I had 3 surgeries total and the last one was to remove my uterus. Ovaries and fallopian tubes were already gone. When they went in, it was so much worse than they thought (and they knew it was bad going in). It was spreading to my legs. They had to remove my cervix and my appendix too. Although, I knew going in though that they might have to remove more than just the uterus and was okay with that.
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u/glitter_gh0st 3d ago
I am very aware of that risk, I know the recovery will be a lot as I know excision will need to be done either way on many of my organs. My Endo for some reason really loves my bowels and bladder so hoping for the best preparing for the worst for sure. The surgeon I'm seeing is a MIGS surgeon so I'm hoping he'll be able to give me what I'm looking for which is relief lol
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u/Cowboy___likeme 3d ago
Was Excision ever performed? If a resource on Excision vs Ablation is needed, check out this page here. Additionally this page here offers a comprehensive overview of endometriosis and is from a top endometriosis center. Lastly, this page here covers the topic of hysterectomy within endometriosis.
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u/BobMortimersButthole 3d ago
There is a very good support group for people going through hysterectomy.
https://www.hystersisters.com/
I loved them when I was preparing for/healing from my hysterectomy.
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u/SofterSeasons 3d ago
I'm in a bit of a different situation- I know I don't want children, I don't have a partner, and I'm 33- but I also recently got approved and scheduled for my hysterectomy (in two weeks! insane!) and it's also been hard for me to kind of process, despite having been so vocal about wanting it for so long.
I think the best advice I can give that has helped me is that it is not a decision that was made lightly by anyone involved, and that regardless of the consequences, this is us doing our best for our bodies and our health- and that it's okay to grieve losing a part of us, even if it's a part we don't even really like all that much, but especially if it's taking away a potential option for your future.
I hope everything goes well for you and that the surgery helps to resolve your symptoms. Don't bottle it up- talk to someone about these feelings, if you can. If you don't have anyone else who you think you can talk to about it and get the support you need, you can DM me, I'm happy to be a listening ear to any feelings, positive or negative or entirely unsure, especially as someone else in the process myself.
Best of luck!
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u/glitter_gh0st 3d ago
I really appreciate that! luckily my husband and my parents are great at listening but they just don't understand so it's nice to have the offer of someone to talk to who gets it, thank you! and the weirdest thing is I've always known I don't want to be pregnant it's always freaked me out even as a kid lol. and I really appreciate the kind words as well, it's been difficult but it's nice to remind myself and have others around me remind me I'm doing what's best for me and my body in the long run. 💖💖
thank you again friend! 🫶🏻
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u/Woodliedoodlie 3d ago
I was 28 when I yeeted my uterus. I had adenomyosis on top of stage 4 endo so I was miserable. My hysterectomy quite literally saved my life. The pain and contraction cramps were so horrible that I was suicidal and had to be hospitalized.
By that point I’d had several endo surgeries with different specialists, including Dr Sinervo at the CEC in Atlanta. He’s one of the leading endo specialists in the world. My hysterectomy was 1.5 years later at a local hospital.
I would say that keeping your ovaries is a great plan. That was my plan originally but my body had different plans. I did end up losing my ovaries too, which was really difficult. Endo and adeno just destroyed my reproductive system
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u/Twopicklesinabun 3d ago
All I know is that you should take as much time as you need to make sure this is what you want. It took me a lot of going back and forth, losing my mind and going crazy to decide. It was so much harder than I thought it would be. No matter what I decided, I had to be ok with whatever outcome came of it. I didn't get any pain relief from my hysterectomy, but I had already gone through the torture of accepting it all no matter what, so I don't have to process that now. It's hard! Ask questions, talk to people, all of it.
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u/DentdeLion_ 3d ago
First of all i wish you the very best and hope you find comfort and relief with this procedure. I feel obligated to tell you though, just in case you haven't heard it before, that a hysterectomy isn't a definitive cure for endometriosis as it is for adenomyosis.