Contemplating a hysterectomy - (already lost both ovaries over the last eleven years) UPDATED: hysterectomy sched 3/18

Dear All,

Where to begin...?

I'm a 37-year-old woman who has been in surgical menopause since the age of 30, and who is contemplating a hysterectomy. I have a scheduled consultation on Tuesday, February 2nd. My story is kind of a long and winding one, but to sum up: in 2010, I had to have my right ovary and fallopian tube removed, because it had twisted and died. In 2013, I was able to conceive our son while only having one ovary, but when I was 6 months into my pregnancy, I had to have emergency surgery to have my remaining left ovary and tube removed, because it, too, had twisted and died. I carried our son to term and he was born healthy (my only child), but that day, I entered surgical menopause. It's been a hormonal roller coaster since. I've been on it all--pills, creams, transbuccal, sublinguals, and now I'm on the estrogen patch.

I still have my uterus, and I use a progesterone pill vaginally every night to keep it "healthy." However, for the past 4.5 months, I've been experiencing abnormal bleeding. It ranges from a period-type flow to just a brownish-red discharge, but there's most always something. I had a transabdominal / transvaginal ultrasound in October, after bleeding for a month, and it didn't reveal anything that my doctor was concerned about. It said my myometrium was "slightly heterogenous" and I had "several punctate calcifications," but that's it. My lining was a normal thickness and my uterus wasn't enlarged.

I kept bleeding, so I saw my ob/gyn in December for a uterine biopsy (*shudder*). That came back benign. But my ob/gyn that day suggested I consider a hysterectomy. She basically said: 1) I can't have any more children; 2) do I really want to come back every year to have a uterine biopsy?? (NO!!!); 3) I could get off the progesterone (which is keeping me tired and groggy all the time); 4) had I not been pregnant at the time of my second ovary removal, they would've removed my uterus then anyway.

So here I am. I've been debating this now for over a month. I'm honestly terrified. The past two surgeries I had were life-or-death, and I had no choice. Now here I am, having to make this decision for myself, and I'm worried that I'll make the wrong one. But all things seem to point to having my uterus removed.

I just don't really know what to expect, which I guess is why I have this consultation. I've already been through the hormonal ringer, so it's not like that will hit me hard. Not having ovaries has been extremely difficult in so many ways. I still haven't gotten myself balanced correctly, and it's been over 6 years. I'm just wondering if not having a uterus will come with further side effects that I can't foresee. I know a lot of women have their ovaries, tubes, and uterus all removed at once, and so they're hit with it all simultaneously. I'm in a different type of situation.

Anyway--this is my introduction. Hello to all, and thank you for welcoming me. Any input is welcome.

Hi BeNotAfraid -

I am sorry you are going through all of this. You sound like you have been through the wringer.

My situation was very different: I had a very large complex ovarian cyst (12x9x11 cm) on my left ovary and multiple uterine fibroids. I also had a cancer concern. My surgeon was a gyn onc. Everything was removed: uterus, cervix, tubes and ovaries on both sides, as the right ovary would most likely go bad soon. All was tested and all was benign.

I know this is a hard decision to make for yourself. Having a hyserectomy is such an overwhelming experience. You have to weigh the pros and cons with your current health situation, especially given that you are taking progesterone to bolster the health of your uterus. Talk to your doctor about long-term health effects of both taking progesterone as well as losing your uterus. Can she give you a sense of which is better in the long run?

It may help with your decision if you get other opinions. This may give you peace of mind, or provide you with other options.

Do research, talk to your doctor or doctors, and make the best decision for you.

(((BeNotAfraid))) I'm very sorry you've gone through so much and are once again facing tough decisions. I had a different type of cancer, but do know that for uterine cancers, a D&C is generally considered the gold standard as it samples the entirety of the uterus, not just a small area as is the case with a biopsy. So, this might be something to discuss with your doctor as far as providing additional information toward your decision. If gyn cancer is suspected or diagnosed, we do recommend consulting a gynecological oncologist, if possible. Not only are they the experts in this area, but they are also very skilled surgeons who'd be able to handle anything that might present itself.

This is a difficult situation, and no one truly wants to have surgery or lose more parts than absolutely necessary. But, you do need to weigh everything in total for your overall physical and emotional health. We always say to do your own research, get as many opinions as you need, then do what you feel is best for yourself long term. Sending hugs and every good thought your way.

Thank you, Ladies, for your replies. I greatly appreciate the support.

Monami, thank you for the suggestion regarding a D&C. I hadn't thought of that, and I'll certainly bring it up with the surgeon I speak to on Tuesday. Oddly enough, he is actually a gynecological oncologist, since my ob/gyn (the one who suggested the hysterectomy) always sends her hyst patients to gyn/onc, just in case. Too, she likes knowing that these particular surgeons are versed in this area of the body. I do feel more assured, knowing that I'm seeing a gynecological oncologist, rather than a general surgeon. Hopefully, if I do go through with this surgery, no cancer will be found, but it is good knowing I'm in the right hands just in case.

Marestail, thank you also for writing. Actually, part of our situation is similar. The first ovary I had to have removed was because a large cyst (the size of my fist) had grown on it and had caused it to twist. The pathology report said the cyst was borderline malignant, so I had to see an oncologist afterwards. The oncologist couldn't do anything further for me, however, since the cyst, ovary and tube were already removed. Thank you, too, for the suggestion regarding asking about the long-term effects of progesterone use vs. having my uterus removed. That's a good thing to ask. I've been on progesterone now since December of 2014. It's very difficult for me to wake in the morning, and I think I'm more prone to depression on the progesterone. I'd ideally like to get off of it and reduce my estrogen if I can. So that is something to consider.

On top of this particular issue and all that has surrounded it, I've also been diagnosed with temporal lobe epilepsy, so I'm also trying to figure that out. I'm currently not on medication to control it. My concern is that removing my uterus will mean having to alter my hormones yet again and that altering my hormones may affect my seizure activity. I know that's not something to really discuss on this forum, but I thought I'd give a fuller picture of my situation in case anyone wants to chime in.

I really appreciate you both taking the time to write. My head is spinning lately. I guess all I can do is go to this consultation, see what transpires, and go from there!

I'm very glad you're consulting a gyn/onc and kudos to your ob/gyn for the referral. For that appointment, write down any and all questions or concerns you might have and take someone with you, if possible (another set of ears). And, be sure to get copies of all your tests, path reports, etc., so you'll have them for your own reference. Also, be sure your docs are aware of all of your medical issues and history, even if it doesn't appear to be something which would be relative to the situation at hand.

And, yes, this all does make your head spin for certain. Please try not to let your mind race too far ahead of things and just take one step at a time.

	Quote:
Originally Posted by BeNotAfraid Dear All, Where to begin...? I'm a 37-year-old woman who has been in surgical menopause since the age of 30, and who is contemplating a hysterectomy. I have a scheduled consultation on Tuesday, February 2nd. My story is kind of a long and winding one, but to sum up: in 2010, I had to have my right ovary and fallopian tube removed, because it had twisted and died. In 2013, I was able to conceive our son while only having one ovary, but when I was 6 months into my pregnancy, I had to have emergency surgery to have my remaining left ovary and tube removed, because it, too, had twisted and died. I carried our son to term and he was born healthy (my only child), but that day, I entered surgical menopause. It's been a hormonal roller coaster since. I've been on it all--pills, creams, transbuccal, sublinguals, and now I'm on the estrogen patch. I still have my uterus, and I use a progesterone pill vaginally every night to keep it "healthy." However, for the past 4.5 months, I've been experiencing abnormal bleeding. It ranges from a period-type flow to just a brownish-red discharge, but there's most always something. I had a transabdominal / transvaginal ultrasound in October, after bleeding for a month, and it didn't reveal anything that my doctor was concerned about. It said my myometrium was "slightly heterogenous" and I had "several punctate calcifications," but that's it. My lining was a normal thickness and my uterus wasn't enlarged. I kept bleeding, so I saw my ob/gyn in December for a uterine biopsy (*shudder*). That came back benign. But my ob/gyn that day suggested I consider a hysterectomy. She basically said: 1) I can't have any more children; 2) do I really want to come back every year to have a uterine biopsy?? (NO!!!); 3) I could get off the progesterone (which is keeping me tired and groggy all the time); 4) had I not been pregnant at the time of my second ovary removal, they would've removed my uterus then anyway. So here I am. I've been debating this now for over a month. I'm honestly terrified. The past two surgeries I had were life-or-death, and I had no choice. Now here I am, having to make this decision for myself, and I'm worried that I'll make the wrong one. But all things seem to point to having my uterus removed. I just don't really know what to expect, which I guess is why I have this consultation. I've already been through the hormonal ringer, so it's not like that will hit me hard. Not having ovaries has been extremely difficult in so many ways. I still haven't gotten myself balanced correctly, and it's been over 6 years. I'm just wondering if not having a uterus will come with further side effects that I can't foresee. I know a lot of women have their ovaries, tubes, and uterus all removed at once, and so they're hit with it all simultaneously. I'm in a different type of situation. Anyway--this is my introduction. Hello to all, and thank you for welcoming me. Any input is welcome.

I am also 37 at 35 I had my right ovary both tubes and my uterus removed and it was the BEST decision of my life. It was rough for the first few days but after that I felt better than I did in years.

Hi Sweettart44314--thank you for your reply and for your words of encouragement. Having my ovaries removed has been very difficult. I still haven't figured out the right HRT. I'm hoping that if I do decide to go through with having my uterus removed, it will have only positive results. Perhaps I can get some energy back somehow (maybe my uterus is inflamed? I don't know).

I'm glad to know you've had such a positive experience. I wish you the best!

	Quote:
Originally Posted by BeNotAfraid Dear All, Where to begin...? I'm a 37-year-old woman who has been in surgical menopause since the age of 30, and who is contemplating a hysterectomy. I have a scheduled consultation on Tuesday, February 2nd. My story is kind of a long and winding one, but to sum up: in 2010, I had to have my right ovary and fallopian tube removed, because it had twisted and died. In 2013, I was able to conceive our son while only having one ovary, but when I was 6 months into my pregnancy, I had to have emergency surgery to have my remaining left ovary and tube removed, because it, too, had twisted and died. I carried our son to term and he was born healthy (my only child), but that day, I entered surgical menopause. It's been a hormonal roller coaster since. I've been on it all--pills, creams, transbuccal, sublinguals, and now I'm on the estrogen patch. I still have my uterus, and I use a progesterone pill vaginally every night to keep it "healthy." However, for the past 4.5 months, I've been experiencing abnormal bleeding. It ranges from a period-type flow to just a brownish-red discharge, but there's most always something. I had a transabdominal / transvaginal ultrasound in October, after bleeding for a month, and it didn't reveal anything that my doctor was concerned about. It said my myometrium was "slightly heterogenous" and I had "several punctate calcifications," but that's it. My lining was a normal thickness and my uterus wasn't enlarged. I kept bleeding, so I saw my ob/gyn in December for a uterine biopsy (*shudder*). That came back benign. But my ob/gyn that day suggested I consider a hysterectomy. She basically said: 1) I can't have any more children; 2) do I really want to come back every year to have a uterine biopsy?? (NO!!!); 3) I could get off the progesterone (which is keeping me tired and groggy all the time); 4) had I not been pregnant at the time of my second ovary removal, they would've removed my uterus then anyway. So here I am. I've been debating this now for over a month. I'm honestly terrified. The past two surgeries I had were life-or-death, and I had no choice. Now here I am, having to make this decision for myself, and I'm worried that I'll make the wrong one. But all things seem to point to having my uterus removed. I just don't really know what to expect, which I guess is why I have this consultation. I've already been through the hormonal ringer, so it's not like that will hit me hard. Not having ovaries has been extremely difficult in so many ways. I still haven't gotten myself balanced correctly, and it's been over 6 years. I'm just wondering if not having a uterus will come with further side effects that I can't foresee. I know a lot of women have their ovaries, tubes, and uterus all removed at once, and so they're hit with it all simultaneously. I'm in a different type of situation. Anyway--this is my introduction. Hello to all, and thank you for welcoming me. Any input is welcome.

Wow that's been a ride for you!
I had my hysterectomy in Nov, ovaries still in. Its been a long recovery but steady with no issues. Pain is still there but receding each week. At this rate it will be about 14 weeks to be pain free i think. That's with key hole surgery.
I would say go for it. What reasons are there for keeping it. If it takes you off some drugs that aren't working gor you and you get no periods and less testing then that's a winner in my view. It was a daunting decision and had my doubts but long term it will be for the best. Good luck.

Hi and welcome! I am also 37 I just happened to see your post and wanted to share my thoughts. I had a complete hysterectomy in 2015. I bled for over 1 year daily and after trying everything I ended up taking everything out. I had already had my two babies so no worries there. Everything was fine for a couple of years as far as HRT went. I was on premarin about 2 years ago (ish) I also added testosterone. My sex drive had completely tanked!!! After repeatedly asking for help from my GYN and getting nowhere I found a hormone clinic that is amazing! For the first time since surgery I am finally starting to feel like myself again. I am using a cream daily and that's it. I highly recommend finding a HRT specialist to help with HRT. Based on my bloodwork my old GYN would not adjust my meds due to them reading H. Well as it turns out women and just like men (duh) when it comes to hormones. Some just need more than others. Turns out I just needed more. After tons of researching and millions of questions I feel better than ever. Anyway, I did go through a blue period of being sad about missing my parts and sometimes it comes up when I get around those sweet little babies, but other than that I know I did what was right for me. My advice is do what you feel is right. If it feels like the right thing it probably is. Ask any questions that come to you and don't be afraid to take your time making the decision. I hope you feel better soon and wish you the best of luck. This website is amazing for support. I often visit and everyone here is always so sweet. I would be happy to answer any questions on my experience if you have any others.

Hi BeNotAfraid, So sorry you are in this situation. I know sometimes you feel like you're in a blender on high and dont know which way to go.
I had a total hysterectomy three and a half years ago. I had to have it because four years earlier I had started to spot after menopause. They checked and all was well but it continued, two different gyro. said sometime you'll get a hormone flush and it will cause this. They did an endometrial biopsy six times and three D&C'sand several internal ultrasounds and the normal pap smears each year. All were fine. The spotting kept up and then it became just water. Each time I went for an appointment I begged for a hysterectomy. They said unless something showed up they could not do anything. Finally I got them to do an MRI and it showed a neoplam in the uterus. They said it was about 50% thru the uterus. SO I had the total and the lab biopsy came back that it was 1mm. from escaping the uterine wall...1mm. yes thats right 1 millimeter! God intervened for me! ALL THIS TO SAY, do not hesitate to have it done the peace of mind is worth everything. I am thankful everyday that they finally agreed to do an MRI. I pray it will never come back. It is very different to lose our female parts I dont know why, I had my gallbladder taken out 15 years ago and never gave it a thought BUT I still think about having nothing in there and so anatomically it's just like a man's belly....eeewwweeeuuuu hahaha anyway you know what I mean! So please just go ahead and pray all will be well with the biopsy. All my best to you. It has been about 4 years since I have been on so I hope this reaches you. hugs lowcountrygal