Dermoid cyst removal and possible hysterectomy questions

[lucybrown]

TMI, obv.  

In my recent gallbladder/abdominal pain saga, it was found that the dermoid cyst on my ovary has grown significantly.  I've known about it for 15 years, but we took a watch/wait approach until I was done having kids.  It's now the size of a baseball and needs to come out. 

I was talking to my OB about this and other gyn issues.  Heavy, painful periods, pelvic organ prolapse, etc.  I was diagnosed with adenomyosis awhile back.  Her opinion is that I've already bought myself a ticket to surgery for the cyst removal.  It makes sense to do the hysterectomy at the same time.  Uterus, tubes, and likely the one ovary would go.  I should be able to keep the ovary that is cyst free.  I'm seriously considering it because I'm 41, done having kids, and not interested in hormonal birth control to control my periods.  I'm not real sure I want to continue to deal with this until menopause.  I trust my OB completely and think her reasoning makes sense.  I'm not having surgery twice.  She suspects endometriosis as well, but won't know until they're in there.  It will be a laparoscopic/Da Vinci method surgery. 

My questions:
If you've had a hysterectomy and/or dermoid cyst removal, what was the recovery like?  Any regrets or things you wish you knew in advance?

Did the hysterectomy help with organ prolapse?  I don't have any urinary incontinence, but my bladder hangs into my vagina through a split in the muscle/tissue.  Pelvic floor PT is likely in my future.  With an enlarged uterus and large cyst, my OB thinks PT results may be limited. 

What else do I need to know?

[kimmyo73]

I had a complete hysterectomy in December 2020 after finishing with kids, years of abnormal paps, fibroids, and an increase in bleeding even with an IUD...I do HRT and I have never been happier.

As a recently single woman with very few kid-free nights, being a non-bleeder has been great for my sex life since I don't have to pump the breaks unless I want to.

Mine was completely vaginal with three small incisions - I took two weeks off work to recuperate but honestly, I could have gone back to work after a few days.

[litskispeciality]

I'm scheduled to have a hysterectomy at the end of April. Crossing my everything is doesn't get moved. The goal is robotic, keeping the ovaries, but I'm not sure until my consult in 2 weeks. I had a thread about a month ago, and there were a lot of stories, although not so much to your specific situation. 2 weeks back to work seems crazy to me, but I'm glad to see so many stories that it was enough time, just obviously watching weight restrictions, swimming, bathing etc.

I'll be 40 later this year. No kids, never had kids. I have known fibroids, which have been removed and came back. I have horrible periods, which aren't really controlled by birth control, and I really don't want an IUD...esp if I still end up with a hyster in a couple of years. I have some incontience, I always tell people even though I haven't had kids I pee a little if I sneeze or cough, so I'll be curious how they handle that post op.

Overall I feel good with my decision, really relying on the surgeon suggesting the hyster. Doctors just keep telling me I'll end up there, let's exhaust other options first. I think if they're pushing you in that direction they've weighed the options. Wishing you all kinds of luck, and easy, quick healing.

ETA: I talked to someone IRL who had a hyster keeping ovaries. They had known endo, and found aendo (sp) upon surgery. They have no regrets and pushed me to move forward.

[yaga]

There was a recent thread about hysterectomies here, so I won't repeat my experience: pandce.proboards.com/thread/631523/talk-me-hysterecomys

However, I also had adenomyosis and was having surgery anyway, so I said why not take it all out at the same time.

I have 0 regrets.

[lucybrown]

Thanks yaga, litskispeciality. I couldn't find the thread earlier.

[yaga]

Just a note about endo - I would ask your OBGYN what she will do if she finds endo. I'm like a broken record about this but most OBGYNs are not trained to properly remove endo, so I'd want to confirm the type of technique she would do (excision, not ablation) and what other specialists would be involved if you have endo on other places, like your bowel.

I've had 3 surgeries and I still have bowel endo that I need to have removed properly. *sigh*

[foundmylazybum]

I had a hysterectomy and oophorectomy. I did laproscopic/DaVinci.

I posted in the other threads about my experience but I can address some of the new things you asked about.


As yaga also mentioned, a hysterectomy doesn't always handle endometriosis. You can get it removed laproscopically and then if there is some left it can come back and also it can still return and statistically it often does. When women get hysterectomies it does help clear it up in around 85% (which I feel is high) but 15% have recurrence.

I did pelvic floor therapy and found it quite helpful, my issue was different than what you are describing though.

Every person will have a different experience, but personally getting a hysterectomy and my ovaries removed thrust me into medically induced menopause. So..like my sex drive was impacted and I have some pain due to dryness which is super common.

I can't take HRT at all. I'm not an expert on endometriosis but often times it's driven by an overproduction of estrogen/progesterone so one reason to get a hysterectomy is to..stop that production and then going back on hrt could ramp it back up.

You'd then have the menopause symptoms 🤷‍♀️

I think that's something you need to talk to your Dr about.

[yaga]

Just a couple things to note from foundmylazybum's post - if you have endo on your uterus, tubes, or ovaries, then yes removing those organs can cure endo. But it's commonly found on other organs/structures (bladder, bowels, ureters, diaphragm, etc,), so unless it's removed appropriately, you'll continue to have issues. It may not be a recurrence, just inappropriate treatment. Endo tissue can make its own estrogen, so menopause or therapies to put you in medically or surgically-induced (removing the ovaries, which produce hormones) menopause aren't appropriate treatment.

[dragon's breath]

Chiming in on the endo part... I wish I had had them take my cervix with the first round. Apparently, endometriosis is rare on the cervix, but if something is rare or unusual, you can be that's going to bet one of my issues.

I had a hysterectomy at 29, and it wasn't as life-changing as I had hoped. We left the cervix and ovaries. A year later, I had to go back and had the cervix removed because it turned out it was the source of a lot of pain and bleeding.

So, definitely ask questions about where they may find endo, and what to do about it if they find it. I wish I had known it was a possibility at the time.

As for recovery, I have a physical job. I was back to pulling cable a week after surgery (though I probably should have waited two weeks). I was also young. With a desk job, I would think one could safely return to work, at least part time, if they tend to recover well, are young, etc, after a week or two. The newer surgical options rarely require the six-eight weeks of recovery time required in the "old days".

[foundmylazybum]

Mar 16, 2022 17:31:07 GMT -5 yaga said:

Just a couple things to note from foundmylazybum's post - if you have endo on your uterus, tubes, or ovaries, then yes removing those organs can cure endo. But it's commonly found on other organs/structures (bladder, bowels, ureters, diaphragm, etc,), so unless it's removed appropriately, you'll continue to have issues. It may not be a recurrence, just inappropriate treatment. Endo tissue can make its own estrogen, so menopause or therapies to put you in medically or surgically-induced (removing the ovaries, which produce hormones) menopause aren't appropriate treatment.

Yes, this is a very clear way to describe it! And I'm sorry if the way I described it was not. I follow the endomonologues on instagram and she has a lot of reputable resources on endometriosis on her blog. It has been a helpful resource for me.

[claudiakishi]

I don’t mean to hijack the thread but for those of you who had adenomyosis, how were you diagnosed? My gyne has always said it can’t be diagnosed until I have a hysterectomy and pathology is done on the uterus.

[yaga]

Mar 17, 2022 6:52:57 GMT -5 claudiakishi said:

I don’t mean to hijack the thread but for those of you who had adenomyosis, how were you diagnosed? My gyne has always said it can’t be diagnosed until I have a hysterectomy and pathology is done on the uterus.

It was suspected based on MRI and a few ultrasounds I had more recently. The rest of the ultrasounds I had over the years referenced a submucosal or intramural fibroid. Pathology confirmed diffuse adenomyosis, made no reference to a fibroid. I has complicating factors that lead to me deciding to get it removed because they essentially ruled out any possible hope of pregnancy.

Radiology can be helpful, but can't rule anything out. I just looked at my MRI and it said there was nothing in the bowel area, for example... but I had symptoms going back to my late teens/early 20s.

[cuadrado]

I cannot speak to a hysterectomy, but I had a dermoid cyst and it was causing insanely heavy periods. I had it removed last year and my periods are now normal. I do not have endometriosis so that wasn't a factor in my experience.

[lucybrown]

Mar 17, 2022 8:02:57 GMT -5 cuadrado said:

I cannot speak to a hysterectomy, but I had a dermoid cyst and it was causing insanely heavy periods. I had it removed last year and my periods are now normal. I do not have endometriosis so that wasn't a factor in my experience.

Very interesting.  I've known about this dermoid for 15 years.  My periods have always been so terrible, but are worse with age.  I'm wondering if just the cyst removal might solve a good number of issues. 

claudiakishi, adenomyosis was diagnosed based on symptoms and ultrasounds.  Enlarged uterus, mottled appearance in ultrasound, and heavy, painful periods. There's no way to know for sure until surgery, but it's highly suspected.  I have not been diagnosed with endo, it's just suspected at this point. It's possible the rectal/bowel pain during periods could be from other issues.   

[cuadrado]

Mar 17, 2022 11:50:17 GMT -5 lucybrown said:

Mar 17, 2022 8:02:57 GMT -5 cuadrado said:

I cannot speak to a hysterectomy, but I had a dermoid cyst and it was causing insanely heavy periods. I had it removed last year and my periods are now normal. I do not have endometriosis so that wasn't a factor in my experience.

Very interesting.  I've known about this dermoid for 15 years.  My periods have always been so terrible, but are worse with age.  I'm wondering if just the cyst removal might solve a good number of issues. 

I've had 2 cysts removed in my lifetime, and both of them caused very heavy periods. Like, bleeding through a super plus tampon in 20 minutes. It was miserable. My first was a hemorrhagic cyst that did not go away on its own, and the second one was a pretty large dermoid cyst. I had abdominal pain with both but not painful periods.

[ellipses84]

I had both my ovaries removed plus hysterectomy. Recovery wasn’t that bad. I needed help with the kids for the first week when DH wasn’t home, primarily because I couldn’t drive and was really out of it with meds and exhaustion. I took a month off work because I could and it was paid. I think I worked from home for another couple weeks. I could have gone back to work sooner but I worked downtown where I had a long walk with a heavy laptop bag to get from my car to the office, with no closer parking options. I could see myself doing something stupid to injure myself in the morning rush to get the toddler to daycare and to work. For laparoscopic, there is a small risk they could get in the OR and realize they can’t do it and have to do it the old fashioned way, which can have a longer recovery time. I wanted to tell my work a definite return date so I accounted for that.

This probably doesn’t apply to you if you keep one ovary. I wasn’t really warned about the long term impacts. I gained 50lbs within a few months due to hormonal weight gain. I’ve been working so hard with exercise and diet for 2 years and cannot lose it. It’s frustrating because I did the surgery due to high ovarian cancer risk, but the extra weight increases my risk for other cancers and I just got results back that I’m pre-diabetic. I wish I had started exercising as soon as I could after surgery. I would have eaten better too. I never struggled with my weight before so I thought I might gain 20 lbs and could lose it easily so I wasn’t really watching what I ate and was pretty inactive during recovery. I use an estrogen patch (which my Drs have conflicting opinions on, but have agreed it’s ok due to being too young for menopause, the low dose, and the benefits vs. risk).

Not having a period is amazing! Total TMI, I have more white discharge, similar to pre-puberty. Sex has been normal/ good right after recovery. I don’t have a super high sex drive typically but it was highest during recovery when I couldn’t have sex, lol.