Agonizing over hysterectomy possibility

Hello everyone!

I’m 27 years old and I’m here trying to learn about hysterectomy. I have a surgery coming up to clear adhesions caused possibly by endometriosis. I went to my women’s doctor (doc #1) a couple of months ago with symptoms that indicated endometriosis. She ordered an ultrasound that showed my ovaries and uterus are stuck together by (presumably) adhesions. It also looks like my uterus is folded and stuck to itself. Since I haven’t had abdominal surgery and very unlikely to have had an untreated STD, they believe it is endometriosis. Since I don’t do well with hormones, she (#1) referred me to an OBGYN surgeon (#2).

My surgical consultation went really well. The surgeon (#2) just seems so competent and considerate and knowledgeable about endometriosis (especially after the stories I’ve read about other doctors). My surgeon was upfront with me and said that with the signs on my ultrasound, I need to think about how I will feel if my uterus, ovaries, etc are too damaged to salvage during surgery. She said of course that with someone my age, she does her absolute most to make sure I have at least one ovary left. She also mentioned that my results mean she has to warn me of an increased risk of a temporary ostomy if my bowels are involved, so she (#2) will have a general surgeon (#3) on standby. I know this sounds alarming, but I have symptoms on radiology which lean toward a severe stage of endometriosis. She (#2) is really being up front about what’s possible and she’s giving me the time to think about it by bringing these things up. Everything I’ve read in research papers and online are consistent with what she’s (#2) said too. I’m also really glad she brought all this up because it means I can think about it now and then I won’t wake up from surgery with the typical, “I didn’t touch that because we weren’t prepared for it.” She is preparing for every possibility. It’s kind of amazing. And I know it has the potential to mean less surgeries later.

Everyone always asks me: No, I haven’t had a second opinion from another surgeon. But remember that I did have my original doctor (#1) that referred me. I’ve also spoken to a doctor friend (#4), a nurse friend with severe endometriosis (#5), as well as chatted with two other doctors of mine (#6, #7) about this surgeon (#2) and what she said. My other two doctors (#6 primary care physician that understands endometriosis, #7 anesthesiologist from a different surgery in January) know this surgeon (#2) because it is a university town. These doctors (#6, #7) have agreed with what I’ve been told by the surgeon (#2) and do not find anything to be a red flag.

But it’s been a freaky thing to think about. This all sort of came out of the blue in that I had told myself my pain experience and symptoms were normal. I was kind of shocked when my women’s doctor (#1) actually took me seriously and presented a diagnosis on a platter, as well as quick next steps for confirmation and treatment.

So now I just keep thinking about hysterectomy. I know I need to be prepared with my thoughts on it when I go to preop in two weeks.

It’s been kind of crazy to think about. I just haven’t ever considered it before.

I don’t feel strongly the need to have children, so that isn’t a major factor for me (although I won’t lie that it has been a bit of a mourning for me to think I may not have the option anymore).

There’s the weird feeling of not being “womanly” by losing reproductive ability. I already don’t feel womanly due to PCOS.

I also feel strange in the I’ve dealt with heavy periods for so long and I’ve come to this point in life where I feel like I know my body. My period is basically a frenemy or bad family member: I may not like it, but it’s familiar and I have tactics to deal with it. It kind of makes me sad I might not have those anymore. It’s almost this weird corner of my identity to promote menstrual cups and try different period products. It has been joyous to find things that work. And it’ll be weird to... get rid of that stuff?

If it were just that, I’d be okay. But I really worry that if I have endometriosis that severe, I’ll have to worry about it spreading again and needing more surgery and then losing my ovaries early too. It seems irrational; losing my uterus or not does not prevent or guarantee either way me losing or keeping my ovaries at another point. But I keep thinking, “If it can’t grow on my uterus or Fallopian tubes, it’ll have to grow somewhere else!!” I guess I know if I’m facing a possible hysterectomy now, it’s likely I’ll face oophorectomy later in life regardless and that makes me sad.

Related to possibly losing my ovaries at some point in life is that I take terribly to hormones and I just can’t stand to think of needing to be on HRT. So I’m freaked out about that, even though it’s probably not an issue for now.

Finally, I found all these terrible websites that talk about why hysterectomy is bad and I worry if any of what they say is true or not. Like do you really become shorter and fatter?! I’m already short and fat. Do you really have onset of back and hip pain? I’ve already had back pain since high school. Is it true that your risk for coronary artery disease is so much higher? Are these just scare tactics and poor studies?

I just don’t know.

I know you’re going to say to talk to my surgeon (#2). And I will... in two weeks. She’s been great and I’ve actually spoken to her on the phone and through messages since our consultation, but I don’t want to bother her too much either.

The main thing I keep wondering is, what makes an organ too damaged to keep?

Please help ease my worried brain and aching heart. I haven’t found anyone else that can.

Thank you,
Mystupidovaries

Hi,

So I’m 22 and just had a hysterectomy in October 2020. I had endo too, adenomyosis, and they found that my uterus was literally contracting spontaneously as if I were in labor- I was a complete medical anomaly and my doctors had never seen or heard of random contractions like that before in someone so young who had no chance of being pregnant. My endo or adeno were not as significant as yours, I was only stage 1.

I tried four birth controls, medically induced menopause with the orilissa medication, all sorts of pain meds, seven different doctors (like one for every horcrux am I right???), and two surgeries before getting to the hysterectomy. It was a long road to get to the surgery but SO WORTH IT. I too don’t want biological kids, I’d rather adopt, so I wasn’t worried about that either. But I still got a lot of questions about it which they had to ask and I imagine that you’ll get the same questions too. They have to make sure you’re certain and that you can live without being able to get pregnant.

I completely understand not feeling womanly enough. When you’re in pain all the time and your hormones are literally all over the place, it’s hard to even feel human But you will in no way, shape, or form be any less of a woman if you have this surgery, or whatever choice you make. Being a woman is not limited to being fertile or having the “right anatomy”.

To address your concerns that the surgery will make you shorter, bigger, or have other weird effects- nope. Nope nope nope. That’s definitely scare tactics and people who don’t know what they’re talking about. There are always risk factors with any procedure but your doctors will know what those are and what applies to you and your body. As a student journalist my instinct was to research EVERYTHING and find all the answers on my own but when you’re research medical stuff, things get sticky really fast and the internet hits you with all sorts of false information.

For me, the surgery was one of the best things to happen to me regarding my reproductive health in a long time. I was in pain every day, struggling to work and study, and nothing seemed to be helping. I’m still getting my head together after everything I’ve been through and the recovery was tough, but I’m not in pain anymore and not stuck having take a fistful of medications everyday.

The best you can do is find a doctor you trust, ask them all the questions you can, use this site to think of any questions or ideas you’re curious about, and if you’re going to do research make sure you the sources you use are legitimate.

I hope this helps some, if at all. I’m so sorry you’ve also had to go through all this hell while so young. It sucks to be spending your twenties feeling like your uterus is exploding inside your body. One of the sayings I used to keep me going was “like Gloria gaynor, I will survive, but I will ***** about all this **** in the meantime.” You’re welcome to steal it.

It sounds like you have some really good doctors. I like the way your #2 doctor explains things up front like complications that could arise and what would be necessary to correct it. Not all doctors are equal in that respect. You're very fortuneate.

From other posts I've read here you are correct that endometriosis can show up in other places even after a hysterectomy but that doesn't necessarily mean it will. As for the adhesions, some women have had great success with pelvic floor therapy. That's something I plan on asking my doctor about for myself.

You are doing the right thing to look into answers for your questions and support before your surgery. If you're a praying women, this would be a good time to do that along with your research. I hope your surgeon can help you without having to remove your uterus however if that isn't possible and a hysterectomy is needed know this...you are still 100% women. Every fiber of your body, your DNA, clearly makes you a W O M A N. I hope you have great success with your surgery and your health is improved. We'll be here for you!! God bless!!❤️ Big 🤗

I am 38 and had a hysterectomy at age 37 due to stage 4 endo after already having one excision surgery. One thing you want to make sure of is that your doctor excises (not abalates) the endo while doing the lap and possible hysterectomy. One thing that stood out to me was your mention if an ostomy. Most doctors who know how to properly treat endo on the bowels (I had a huge portion on my large intestine, bowels and rectal wall) should know to to properly excise it without you needing an ostimy. I just want you to know that. Obviously I don't know how bad your endo is and the surgeon won't until the lap, but I just wanted to make sure you don't end up with an unecessary ostomy. I am also short and stout and my weight fluctuates now just like it did before my hysterectomy- pretty much same rules apply as before with needing to eat healthy and exercise if I don't want to add extra padding. I did keep my ovaries. My appendix, fallopian tubes, uterus, and cervix were removed along with the excision of all endometriosis that was found during my surgery. Thinking of you and ask any questions that you can think of!

	Quote:
Originally Posted by DarbyM Hi, So I’m 22 and just had a hysterectomy in October 2020. I had endo too, adenomyosis, and they found that my uterus was literally contracting spontaneously as if I were in labor- I was a complete medical anomaly and my doctors had never seen or heard of random contractions like that before in someone so young who had no chance of being pregnant. I tried four birth controls, medically induced menopause with the orilissa medication, all sorts of pain meds, seven different doctors (like one for every horcrux am I right???), and two surgeries before getting to the hysterectomy. It was a long road to get to the surgery but SO WORTH IT. I too don’t want biological kids, I’d rather adopt, so I wasn’t worried about that either. But I still got a lot of questions about it which they had to ask and I imagine that you’ll get the same questions too. They have to make sure you’re certain and that you can live without being able to get pregnant. I completely understand not feeling womanly enough. When you’re in pain all the time and your hormones are literally all over the place, it’s hard to even feel human But you will in no way, shape, or form be any less of a woman if you have this surgery, or whatever choice you make. Being a woman is not limited to being fertile or having the “right anatomy”. To address your concerns that the surgery will make you shorter, bigger, or have other weird effects- nope. Nope nope nope. That’s definitely scare tactics and people who don’t know what they’re talking about. There are always risk factors with any procedure but your doctors will know what those are and what applies to you and your body. As a student journalist my instinct was to research EVERYTHING and find all the answers on my own but when you’re research medical stuff, things get sticky really fast and the internet hits you with all sorts of false information. For me, the surgery was one of the best things to happen to me regarding my reproductive health in a long time. I was in pain every day, struggling to work and study, and nothing seemed to be helping. I’m still getting my head together after everything I’ve been through and the recovery was tough, but I’m not in pain anymore and not stuck having take a fistful of medications everyday. The best you can do is find a doctor you trust, ask them all the questions you can, use this site to think of any questions or ideas you’re curious about, and if you’re going to do research make sure you the sources you use are legitimate. I hope this helps some, if at all. I’m so sorry you’ve also had to go through all this hell while so young. It sucks to be spending your twenties feeling like your uterus is exploding inside your body. One of the sayings I used to keep me going was “like Gloria gaynor, I will survive, but I will ***** about all this **** in the meantime.” You’re welcome to steal it.

My goodness! What a strange thing to see a uterus spasm. I've read that menstrual cramps can be worse than labor contractions, so I'm also not terribly surprised. Your uterus was doing this under anesthesia? That seems completely bizarre.

You know, I think part of the struggle for me is that I haven't been this terribly long road where I've tried a million things for this diagnosis, since I was just given the diagnosis in December. I've always been told I have PCOS and to lose weight, so I figured my problems were related to not being able to lose enough weight or eat health enough (but I do actually eat very healthy and have lost weight, just not enough). I have had a long road of reproductive organ issues related to birth control and trying not to be pregnant, as well as the pains it causes me. I think because I have been in a partnership with a woman for so many years and haven't had to worry about pregnancy, plus I've just sort of decided my pains are 'normal,' that I'm struggling with the whole matter at hand and learning to accept it. There's such grief in it. I feel like it should have been caught before this - especially two years ago when I couldn't stop bleeding and I saw several doctors for it.

The not feeling womanly enough thing is a little funny too. I think that just stems from my general body hatred. It doesn't act the way it should and here's more evidence of it. I sort of don't care about subscribing to being a woman. But I also know how society treats women.

Thank you so much for your great response. It's wonderful to be able to connect to you about this.

Would you be open to elaborating more on your recovery and getting your head together?

Furthermore, were there any signs of your adenomyosis that differed from endometriosis? I've read an article that talks about tenderness at the bellybutton, which I have, and so I'm exploring if I might have adeno. However, my ultrasound and CT scan didn't note much else about my uterus (the lining, etc were regular).

Thank you!

	Quote:
Originally Posted by Magu It sounds like you have some really good doctors. I like the way your #2 doctor explains things up front like complications that could arise and what would be necessary to correct it. Not all doctors are equal in that respect. You're very fortuneate. From other posts I've read here you are correct that endometriosis can show up in other places even after a hysterectomy but that doesn't necessarily mean it will. As for the adhesions, some women have had great success with pelvic floor therapy. That's something I plan on asking my doctor about for myself. You are doing the right thing to look into answers for your questions and support before your surgery. If you're a praying women, this would be a good time to do that along with your research. I hope your surgeon can help you without having to remove your uterus however if that isn't possible and a hysterectomy is needed know this...you are still 100% women. Every fiber of your body, your DNA, clearly makes you a W O M A N. I hope you have great success with your surgery and your health is improved. We'll be here for you!! God bless!! Big

Yeah, actually I really love how my surgeon explained things. She was so forthright and honest. She didn't push anything on me - she presented birth control and artificial menopause, but didn't push me to do them when I told her why those weren't good options for me and hadn't been in the past.

After surgery, I will have pelvic floor therapy, so that is already in the works!

Thank you so much for your kind response!

	Quote:
Originally Posted by krubesch I am 38 and had a hysterectomy at age 37 due to stage 4 endo after already having one excision surgery. One thing you want to make sure of is that your doctor excises (not abalates) the endo while doing the lap and possible hysterectomy. One thing that stood out to me was your mention if an ostomy. Most doctors who know how to properly treat endo on the bowels (I had a huge portion on my large intestine, bowels and rectal wall) should know to to properly excise it without you needing an ostimy. I just want you to know that. Obviously I don't know how bad your endo is and the surgeon won't until the lap, but I just wanted to make sure you don't end up with an unecessary ostomy. I am also short and stout and my weight fluctuates now just like it did before my hysterectomy- pretty much same rules apply as before with needing to eat healthy and exercise if I don't want to add extra padding. I did keep my ovaries. My appendix, fallopian tubes, uterus, and cervix were removed along with the excision of all endometriosis that was found during my surgery. Thinking of you and ask any questions that you can think of!

Yes!! I've got "Excision or ablation?" as my first question for my preop appointment. I mentioned excision in the consultation and she said yes, but it was before I had done enough research to make sure she would not use ablation.

Thank you for this information! When my surgeon explained all of this about the ostomy, it was based on her experience and my test results. If she hadn't mentioned these risks, I think I would be more concerned actually after all of the medical papers I've been reading. It really all lines up. Luckily, she will have another surgeon on hand if she thinks my bowels will have any major issues. From what I've read, an ostomy is really only necessary if your rectum is involved.

Could you tell me if you notice any differences in sex without having a cervix?

How about when you use the restroom since your bowels were involved?

Good! I am glad you are going to ask those questions. I am a lesbian and primarily rely on clitoral stimulation (sorry if TMI) and have not noticed a difference at all. As for the bowels, going to the bathroom is so much more pleasant now! I don't have the horrible shooting searing pain when having a bowel movement anymore. It is so much better now.

	Quote:
Originally Posted by mystupidovaries My goodness! What a strange thing to see a uterus spasm. I've read that menstrual cramps can be worse than labor contractions, so I'm also not terribly surprised. Your uterus was doing this under anesthesia? That seems completely bizarre. You know, I think part of the struggle for me is that I haven't been this terribly long road where I've tried a million things for this diagnosis, since I was just given the diagnosis in December. I've always been told I have PCOS and to lose weight, so I figured my problems were related to not being able to lose enough weight or eat health enough (but I do actually eat very healthy and have lost weight, just not enough). I have had a long road of reproductive organ issues related to birth control and trying not to be pregnant, as well as the pains it causes me. I think because I have been in a partnership with a woman for so many years and haven't had to worry about pregnancy, plus I've just sort of decided my pains are 'normal,' that I'm struggling with the whole matter at hand and learning to accept it. There's such grief in it. I feel like it should have been caught before this - especially two years ago when I couldn't stop bleeding and I saw several doctors for it. The not feeling womanly enough thing is a little funny too. I think that just stems from my general body hatred. It doesn't act the way it should and here's more evidence of it. I sort of don't care about subscribing to being a woman. But I also know how society treats women. Thank you so much for your great response. It's wonderful to be able to connect to you about this. Would you be open to elaborating more on your recovery and getting your head together? Furthermore, were there any signs of your adenomyosis that differed from endometriosis? I've read an article that talks about tenderness at the bellybutton, which I have, and so I'm exploring if I might have adeno. However, my ultrasound and CT scan didn't note much else about my uterus (the lining, etc were regular). Thank you!

Hi again,

I’m totally open to tell a little more about my recovery-
So you know how it is to be living with such ungodly pain for so long and the number it can do on your mental/emotional health. Coming out of a place with that chronic pain, the fatigue, and all the different chemicals in my body from the medications and birth controls, required a major shift in my body chemistry after the surgery as all my systems finally got to work on their natural rhythms again without the chemical influence of meds. This made me feel really on the fritz for a while and I was struggling with mood swings, going from no appetite to cravings, super tired to super restless, and issues with motivation. I had been through stuff similar to this before when I did the menopause treatment, came out of that and essentially went through puberty part 2: the sequel no one wanted, and then as I came off the birth control in prep for the surgery. But there was something different to the post surgery feelings which I guess had to do with absorbing and processing that all the hell I went through was finally over and done with.

I tried describing in something i wrote as being calcified. While I was in the middle of everything I had to keep my head down and survive and push through to the next task, treatment, doctor, or procedure and I didn’t give myself the opportunity to feel how crazy everything was because if I broke down I thought I’d keep breaking under everything that still had to happen. It was like all my unshed tears were sea water washing my insides with salts and minerals that calcified over my skeleton and stuck me in this rigid shape that would hold me up even when I stopped trying to hold myself together. If any of that makes sense.

As for any differences between the endo and adeno- unfortunately I have no idea. With the spontaneous contractions, they threw everything out of whack in that my doctors couldn’t be sure how things and symptoms were influencing each other because they had never seen this before, had no understanding of it, and couldn’t be sure if somehow the endo or adeno were causing the contractions or it was all separate, etc. in short there were a lot of hard to answer questions.

Since I’m kinda working backwards here, with the unwomanly-ness: yeah when your body refuses to function correctly and you feel entirely broken suddenly everything about yourself feels wrong and it makes you think about elements of yourself you might not have cared about before.

And yes the length of time women have to suffer before getting a diagnosis and relief is EXHAUSTING. I’ve been doing research as part of my grad program on gender bias in obgyn healthcare and the impact on patients, and I found that on average it takes 10years to get a diagnosis for reproductive health issues. It took me eight. I swear being told “lose weight/ it’s just stress/ it’s just bad periods” are the new ways of saying “well boys looks like the diagnosis is hysteria, off to the asylum with her.” Like how come the seventh doctor was able to see my contractions on the ultrasound but not the other six??? Could they have caught this when I was 14 and passing out from the pain for the first time while I wasn’t even bleeding?? There’s definitely a good amount of anger at the whole medical system and cultural biases against women and our bodies that I’m still struggling with because there’s no easy outlet for it.

I hope this helped some. You’re totally free to dm me and I’d be happy to connect with you another way if you want to swap stories, or just yell in frustration.

	Quote:
Originally Posted by krubesch Good! I am glad you are going to ask those questions. I am a lesbian and primarily rely on clitoral stimulation (sorry if TMI) and have not noticed a difference at all. As for the bowels, going to the bathroom is so much more pleasant now! I don't have the horrible shooting searing pain when having a bowel movement anymore. It is so much better now.

That’s not TMI! If we don’t talk about these things, they won’t be known. I’ve been with my partner 5 years and certainly penetration isn’t a given when you’re two ladies. I think if I had been with a man, I would have probably figured out the endometriosis sooner. I realized something was wrong when I was younger and had a boyfriend (i.e. penetration and birth control were problematic).

Fate brought me a lady and it hadn’t been as apparent to me sexually that I was having pains. Honestly, just sort of admitted it the other day..

I’m so glad you’re feeling better!