Managing endometriosis after hysterectomy (2020)

I had my surgery two years ago. I have one remaining ovary. Initially, I was doing well after the 6 month recovery period. I had sore breasts during my cycle, but didn't really have any abdominal pain at first.

The last few months, I've been experiencing increased pain during my periods - sore breasts, bloating/pressure, a lot of soreness, and possible cramping. My back, stomach, and breasts get sore. I feel pretty crappy and in pain for about 3-4 days. I also experience the tell-tale depression the day before my cycle starts.

I'm feeling like my endometriosis is back (or probably never went away). What have you found to be helpful with managing endo after hysterectomy? Did you have to go back onto birth control? Did anyone find progesterone cream helpful? Or, what methods have you tried?

I have made an appointment to see my gyno next month and do my women's exam. I'm hoping that he can make some suggestions to help me manage pain and discomfort. I can't really afford to get a laparoscopy if the endo is back. I'm still paying off my previous surgeries from 2018.

I also want him to check my hormone levels in case I'm having a hormone imbalance.

I'd love to know how you manage your endo pain/symptoms.

Was your uterus removed? I didnt think we still had periods after a hysterectomy. I am only 10 weeks or so post op but i have no periods and no pain and no ovaries. Endo can grow back of course, but did your surgeon remove every last bit of endo? If you still have periods i can see why your endo is still painful. Periods and endo do not work well together. Before my hysterectomy, i was on birth control for just a couple months because the periods had to stop, it was just too painful to go thru with them.

I had a total hysterectomy and only have one ovary. My uterus and cervix are gone, but I still have a monthly menstrual cycle, just no bleeding. I know when it comes because of the breast pain and moodiness and then the next day I have bloating and cramps which last around four days.

I am pretty sure not all of the endo was removed. The doctor said he found very little and he ablated some of it (which I wasn’t super excited about as I would have preferred excision). So it’s grown back I suspect or maybe some developed where my scar tissue is.

This is my guess anyway, though I do want to have my hormones checked just in case they are out of balance.

Hi vr_2018, I am only 11 months post op and had my uterus and cervix removed ans still have both my ovaries. I get the same thing. As a matter of fact I'm near my cycle and got this sharp pain where my left ovary. Before my hysterectomy to manage my symptoms I took primrose oil every day and made sure I exercised and that seemed to help. Now I have really bad plantar faciaitis and can't exercise like I used to, so there is still a little plain... but the primrose oil really helps. I got that recommendation from my gynecologist and it works. She even said don't bother with the expensive stuff.. she said just get it at walmart. I get mine at CVS because they always have a BOGO sale and as long as I take it.. the PMS symptoms subside.

	Quote:
Originally Posted by cjarbell Was your uterus removed? I didnt think we still had periods after a hysterectomy. I am only 10 weeks or so post op but i have no periods and no pain and no ovaries. Endo can grow back of course, but did your surgeon remove every last bit of endo? If you still have periods i can see why your endo is still painful. Periods and endo do not work well together. Before my hysterectomy, i was on birth control for just a couple months because the periods had to stop, it was just too painful to go thru with them.

If you keep at least one ovary, you’re still going through your cycles, just no bleeding

	Quote:
Originally Posted by Lagcyr409 Hi vr_2018, I am only 11 months post op and had my uterus and cervix removed ans still have both my ovaries. I get the same thing. As a matter of fact I'm near my cycle and got this sharp pain where my left ovary. Before my hysterectomy to manage my symptoms I took primrose oil every day and made sure I exercised and that seemed to help. Now I have really bad plantar faciaitis and can't exercise like I used to, so there is still a little plain... but the primrose oil really helps. I got that recommendation from my gynecologist and it works. She even said don't bother with the expensive stuff.. she said just get it at walmart. I get mine at CVS because they always have a BOGO sale and as long as I take it.. the PMS symptoms subside.

Thank you for the suggestion. I think I have some in the house; I’ll check and see if it’s still good. Did you notice improvement pretty quickly? Or is it one of those things you have to take for a couple of months before you start noticing improvement?

One of my hyster sisters in my adenomyosis group had recommended some Chinese herbs, but they can get a bit expensive to take on a monthly basis, so I’m hoping to find something more affordable if possible. Evening Primrose is definitely a lot more cost effective if it works for me.

Ohhhh! I did not know that! I am kinda glad I lost both ovaries then, they were painful little suckers!

	Quote:
Originally Posted by GPMS If you keep at least one ovary, you’re still going through your cycles, just no bleeding

I think it takes 1-2 cycles before you really notice the difference, depending on your body and your activity level. At least it did with me. When I was more active it worked by the next cycle, but when I was less active due to injuries, it took a couple of cycles to "kick in".

On this topic, I have been trying to research this in more detail but ... can’t find anything? My concern is, I am 3 months out of a full hysterectomy (no ovaries, no uterus, no cervix), and I feel like i am experiencing PMS syndrome. I’m tired, crabby, constipated, belly pain in the usual spot, Back pain ramping up, peeing a lot, and just feeling miserable like I would before a period but we all know that ain’t happening. I am on HRT, and haven’t wavered a bit.
Has anyone else experienced this? I mean, the surgeon did say he got (what he hoped) was all the Endo removed along with the ovary that blew apart when he tried to remove it. OMG I can’t keep on with this. I hoped this surgery would end it all, and here I am feeling miserable after 3 months of post-surgical relief. Any help or thoughts on this appreciated!! Thank you!

These responses have been good to read as I am going through the same thing after a year of no pain or cramps. I do have discomfort and lots of gut and bowel issues which can all be connected, along with anxiety. For that reason I will begin taking an anti-anxiety med.

I think for the person who had their ovaries removed may be going through surgical mesopause and that can bring on some new issues. But this can be resolved by talking to an OBGYN about taking hormones.

How has everyone else been dealing so far? I have heard of others just having another surgery to remove their ovaries as they could not take the cramping any more.

Wishing you all love,
Melissa