Hysterectomy or hormones?

February 7, 2021 8:20 AM

I've been struggling with significant bleeding over the last few years and previous remedies have stopped working; I need to pretty quickly decide what to do next. My gynecologist feels that we can take one of two paths: hormones or a hysterectomy leaving my ovaries. I could use some help making the decision.

Details: I'm 51. This started about 6 years ago; at that time, I had some polyps removed and an IUD inserted, and that seemed to manage things well. Last fall, the bleeding started heavily again; at that time, I had a new IUD inserted as the old one (a Mirena) was beyond its lifespan. I had more polyps removed, but they also discovered a lemon-sized fibroid. My doctor said at that time that the size of the fibroid precluded some options like ablation. So...six months later. I'm now two and a half weeks into daily significant bleeding-by significant, I mean 1-3 hours every day of changing tampons every 5-30 minutes-blood clots the size of the palm of my hand. I'm anemic. Thank God for COVID, I guess, as I can work from home. Started on a low level of a hormone last week-I have not noticed any difference in the intervening 6 days. When I met with doctor this week, the options were starting on hormones which he felt were very likely to be effective, or a hysterectomy. I will tell you the latter is tempting as I need to be done with this-it's not sustainable-but I also hesitate to jump into major surgery. Significant cardiac issues in my family history that make me worry about hormones, though it sounds like shorter term use is pretty safe. Anyone have wisdom, experience, resources to share? Thank you!

posted by purenitrous to Health & Fitness (18 answers total)

I'm sorry you're having to deal with this. It's scary and exhausting.
All I can say is that I'm close to you in age (49) and a year ago I had a hysterectomy like the one you're contemplating because of having a large fibroid. They left in my ovaries and my cervix. Having a conversation about whether or not to leave in the cervix is an important one, if you decide to go down this route. My GP actually didn't know that was even an option, but my surgeon was very supportive of my decision to leave in the cervix. It means a risk that I could still get cervical cancer, but on balance that seemed like the best decision for me.
The surgery was quite a profound experience, but honestly, I had more discomfort than pain. It also depends on your support network, and your workload - for example, you'd struggle to look after a small child, lift anything at all heavy, do anything like house work for the first 4 - 6 weeks of your recovery time. Even chopping up a butternut was beyond me for the first few weeks. So that might be something to consider.
Another consideration is the type of surgery. I could not afford a laparoscopic hysterectomy, but apparently the recovery time for that is much quicker and it's generally a much less invasive procedure. Find out whether that's an option for you.
It's just over a year since my hysterectomy and I feel strong and healthy and don't have any regrets.
posted by Zumbador at 8:36 AM on February 7, 2021 [1 favorite]

...oh and as for resources for hysterectomy knowledge, I found the Hyster Sisters site to be immensely helpful with down to earth and practical advice and tips.
posted by Zumbador at 8:38 AM on February 7, 2021 [2 favorites]

I had a hysterectomy due to fibroids/bleeding in my mid-30s. One of my best decisions. Cut me open from pelvis to navel (not laparoscopic), and recovery wasn’t that bad. First few days were a bit painful, but followed doctor’s rec for some spinal pre-surgical pain treatment and stayed ahead of it from there and it wasn’t too bad—and I make a scene if I stub my toe. I was back up and returning to normal within a few weeks. The freedom it provided was kind of life-changing. I’d do it again in a heartbeat.
posted by HonoriaGlossop at 8:41 AM on February 7, 2021 [1 favorite]

Response by poster: Thank you both. A couple more details/questions: it sounds like I'd have the vaginal procedure which I guess makes recovery easier? I am blessed with good insurance and lots of accumulated sick leave, so that's great-and have a spouse and kids who are old enough to help (11-23) and friends willing to assist with things like driving to soccer practice. So very fortunate at this point in my life!

Zumbador, thoughts about why it was important to keep your cervix? I haven't even thought about that.
posted by purenitrous at 9:02 AM on February 7, 2021

I had a sub-total hysterectomy (my cervix and ovaries were left behind) when I was 43. I had it done abdominally, so it's a longer recovery period than vaginal.

It wasn't until about a year later that I realised how well I felt, and that for at least the previous 15 years I'd been living with heavy bleeding, fatigue, as well as the unpredictability of when that next 'flood' would be (closed a swimming pool once, it looked like a shark attack...)

I'm glad I kept my ovaries and cervix. I didn't immediately go into menopause, as my ovaries were still functioning. I was also told by a female doctor that keeping the cervix can reduce the risks of damage to the bladder and the nerves around it, and also is more beneficial sexually as the cervix contracts during orgasm. Of course, this means that you still have to have cervical smear tests.
posted by essexjan at 9:18 AM on February 7, 2021 [2 favorites]

Leaving the cervix intact: my surgeon told me there is less chance of complications like damage to the nerves and the bladder if the cervix remains in place. Also less chance of change in sexual response, or damage to the nerves involved in having an orgasm. There was something else that I can't remember properly now, to do with the cervix remaining making it less likely that something else collapses or develops complications - the bladder, maybe? Sorry I can't remember that aspect now.
posted by Zumbador at 9:19 AM on February 7, 2021 [2 favorites]

I have not had a hysterectomy. I do have (had) endometriosis until menopause and it was a huge PIA, although nothing as bad as you have faced, for years. My OB recommended a hysterectomy but I was so close to menopause that I decided to tough it out. My aunt, on the other hand, had a hysterectomy in her 40s because of endometriosis and said it was the best decision she could have made. I don't know what the right decision is for you, but I hope whatever you choose takes care of the problem because no one should have to dealing with that kind of bleeding. Good luck!
posted by Bella Donna at 9:41 AM on February 7, 2021

With regards to the cervix, I remember this sort of coming up on metafilter: This metafilter thread discusses a cosmo article on LEEPs and how the cervix can affect orgasm.
posted by stillnocturnal at 9:51 AM on February 7, 2021 [1 favorite]

I will just say that I am in a very similar situation to you--polyps, big fibroid, heavy bleeding, chronic severe iron deficiency frequently tipping over into anemia. For years I have been strongly urged to have a hysterectomy, but I am choosing instead to have IV iron infusions because I do not consider the risk of sexual side effects to be reasonable. I feel that my uterus itself--not just my cervix--is strongly involved in my orgasms and I'm not willing to risk losing that. I know there are many, many women who are entirely satisfied with their hysterectomies but every time I encounter one in real life (surprisingly often!), I inquire about whether it affected her libido or orgasms and every single time the answer is along the lines of "oh, yeah, there's that," as if it's no big loss, which makes me think that sex was never that great for her in the first place. And if you go poking around online you'll find many sad women who describe their post-hysterectomy orgasms as being like "a little flutter." No thanks. I'm toughing it out until menopause.
posted by HotToddy at 10:58 AM on February 7, 2021 [3 favorites]

Not speaking from personal experience, but a very close friend of mine in her early 30s had a hysterectomy leaving her ovaries after years of wildly heavy, debilitating painful periods and severe endo last year. She was nervous to do it beforehand, especially because she's relatively young, although she had already had children. No joke - she's like a new person now. She's so happy she did it and feels so much better - it's like she glows. Obviously your circumstances may be different, but it's hard to undersell how huge of a transformation it was for her to not be in pain and discomfort for at least a week every month.
posted by amycup at 11:00 AM on February 7, 2021

Oh and also--it's not just women who had their cervix removed. When I was researching ablation, I found many women whose orgasms have been lost or blunted simply due to that procedure, apparently because the scarring makes the uterus more rigid and unable to contract normally.
posted by HotToddy at 11:01 AM on February 7, 2021

I had terrible heavy periods with clotting for years, starting in my teens. Finally got a diagnosis of fibroids (one grapefruit-sized, plus several others) and had a hysterectomy with removal of my cervix at 36. My ovaries were left intact. I had no children and had a bikini incision. When they opened me up they found endometriosis and tons of scarring, so a lot of time was spent cleaning that up. It was the first time I had ever been to the hospital, had anesthesia, an operation - it was a lot. It was SO worth it. No periods, no worrying about bleeding through things, no cramps, no diarrhea, no anemia. Fantastic. I had no issues with orgasms, although the first time after the surgery I was worried it would hurt, but all good. I'm like amycup's friend - it was life-changing in a good way.
posted by XtineHutch at 1:26 PM on February 7, 2021 [1 favorite]

From a user who would prefer to remain anonymous:

To weigh in on the hormones side, I was having serious problems with long term heavy bleeding (also had an iud that helped until it didn’t) and resisted hormones for a while because I’d had problems with severe headaches in the past when I was on the pill (and because I was grumpy about having to take a pill every day after the ease of the iud). But I finally tried low dose pills, taken continuously, on the theory that I could stop and pursue other options if I had negative side effects. I haven’t, and it’s been such a relief to have the bleeding stop. I wish I’d started them months earlier. Might be worth at least trying that - you can always stop again - while you’re thinking about surgery.

posted by jessamyn at 2:12 PM on February 7, 2021

I had a hysteroscopic myomectomy to remove an orange-to-grapefruit sized fibroid 3 years ago. It started out as extra heavy periods and over the course of 6 months escalated to changing super max tampons every 20 mins for 2-3 hrs at a time, big clots.

Fixed the bleeding immediately, now just 2-3 days of light bleeding a month.

The benefit of having it hysteroscopicly is that they go in vaginally and through the cervix, so no incision whatsoever and better recovery. Laproscopic myomectomy would have been the next option if the hysteroscopic option wasn't workable.

I would see about a second opinion with a surgeon who has a focus on minimally-invasive gynecological surgery, if at all possible. With so little focus given to women's sexual health and the complex endocrine interactions I would pursue non-hysterectomy options, personally. Happy to answer any Qs over mail.
posted by foodmapper at 3:57 PM on February 7, 2021

I had a hysterectomy (kept ovaries, cervix removed) last July and it was the most fantastic thing ever. Mine was laparoscopic so i have a bunch of small scars but they all healed very quickly. They decided against removing the very large fibroid vaginally since I'd never given birth (it came out through an extra large incision in my belly button instead ha).

I'm so happy with my hysterectomy I wish I'd I could go back and have it done when I was a teenager. I never had kids and it pisses me off I lost so many years to excruciating pain and debilitating anemia to a stupid organ I never even used.
posted by kitten magic at 9:09 PM on February 7, 2021 [3 favorites]

Hello! I have been where you are, and it sucks so much! I send you sympathy and virtual hugs.

I have had a long history of heavy periods and fibroids. I had a myomectomy to remove a fibroid that was, in my surgeon's words, taking up the entirety of my uterine cavity, and that helped for a while, but the fibroid came back, and it brought friends. I had three large fibroids by the time I decided to have a hysterectomy.

I had my hysterectomy at the end of 2018 and kept my ovaries and it is the best thing I have ever done.

I went to an amazing surgeon (if you are in NYC, I can recommend her) and she talked me through all of my options. I had already made the decision to do the hysterectomy, and since I was 44 and done having kids, there was really no reason for me to suffer through many more years of bleeding. I really wasn't using my uterus for anything except expensive and bloody fibroid storage. I felt as though I kept Tampax in business by myself.

My surgery was laparoscopic. I have a couple of small scars that are barely visible. I feel so much better than I did while I was suffering with pain and heavy bleeding. It is astonishing to me how much that one organ was affecting my overall well-being.

If your doc is offering either hormones or hysterectomy, and not myomectomy (some fibroids can't be removed with surgery if they are in the wall of the uterus), my vote would be hysterectomy.
posted by bedhead at 6:08 AM on February 8, 2021 [1 favorite]

Now that I have read the other comments, I will chime in with my own anecdotal experience: my sexual response and orgasms have not been negatively affected. My libido actually increased because I was no longer experiencing pain.
posted by bedhead at 6:17 AM on February 8, 2021

Anecdata:

I had a post-menopausal complete hysterectomy—uterus, tubes, and ovaries—for (non-malignant) Reasons. It was all done vaginally. I had pain for two or three days afterward which was well-controlled with ibuprofen. Then there was a two-month recovery period during which the doctor advised "nothing in the vagina" and "no lifting over 8 pounds."

Since then, I have experienced no consequences except relief of the symptoms that originally caused me to go to the doctor. My orgasms are fine. If there is a difference in them from what they were when I had a cervix, I haven't been able to detect it.
posted by Weftage at 6:18 AM on February 8, 2021