Hysterectomy? Before Your Pots Dx Or After?

[Bigskyfam]

Would anyone like to weigh in on here or pm personal experience of your hysterectomy? My doc has recommended ocp trial until ablation or hyst. I have menorrhagia. She wants to leave the ball in my court

[Chaos]

POTS started right after mine.

[Bigskyfam]

Did you keep your ovaries? It seems the hormone component is huge.

[corina]

I was advised to have a hysterectyomy years after being diagnosed but as I have trouble with anesthesia (loooooow bp's high hr's, getting very sick and other dysautonomia stuff) I chose to try a mirena first which worked really well for me. I know it didn't for you and I'm really sorry!

Chaos, could it be the anesthesia you had caused or triggered your dysautonomia? I've been searching for others who can't handle anesthesia but haven't found any one (yet). Sorry, don't want to hijack your topic Bigskyfarm!

[Bigskyfam]

Thx for sharing. Not hijacking at all. Collaboration! I'll be happy to get the answer to two questions. I haven't had anesthesia since my dx. However I had a d and c last year in jan and iv sedation for dental work. Good question . My doc did wonder about sedation and anesthesia.

[Chaos]

I had my hyst because of a large ovarian mass and menorrhagia so I kept one ovary. (Also did a supra-cervical hyst. because I think it's really important to keep as much structural integrity in the pelvic floor as possible. That's extra important for anyone with EDS too- IMHO. Incontinence and other "female problems" become an even bigger problem frequently after hysterectomies because of the disruption of the pelvic floor in a normal hyst.)

Corina- Yes, I definitely wonder if anesthesia triggered my POTS. My neuro thinks so. I've only had anesthesia one time since the hyst and that also triggered a massive 10 month relapse and what they now say is ME/CFS onset.

However, I also wonder what part hormones played in the whole episode because I was actually not bad the first day post op. I was up and moving, walking and fine. It was day 2 when everything went to ****. They started me on a hormone patch after one week to try to deal with all the symptoms I was having and while that helped some of my symptoms it almost seemed to aggravate others. The ones it helped were significant enough though that I stayed on it and have been glad I did.

Good luck trying to decide BigSky. It's hard. I'm glad on the one hand to have done it because the constant non-stop bleeding was also a huge drain on my system and not without symptoms. However, if I'd known what was to follow, I'd never have done it. Although, given the characteristics and size of the mass (and the fact that my daughter had ovarian cancer the year before), it didn't seem I really had a choice in the matter at the time.

[Bigskyfam]

There's where I'm at. Thanks for your in depth reply. I meet with a pots doc mid June and we'll chat. I am doing better than oct. Was bed bound then housebound. Now out and about limited on good days. Don't want to go down the slippery slope

[TCP]

I've had surgery 6 ops since 1985 and one was a hysterectomy when I was 38. Despite the ME I was OK with all except the last one. You have to really make sure the anaesthetist understands your condition and takes measures to limit any problems. When I was first ill with ME I had EBV and surgery. maybe there was a link? I do think I already had the POTS/EDS/ME/CFS/Whatever in me from birth.

[cleo]

I was very lightheaded after mine for about 5 days and then the lightheadedness left and I felt fine. A few months later I developed a viral infection and the lightheadedness returned and has pretty much been with me ever since.:-)

[issie]

I've had surgery 6 ops since 1985 and one was a hysterectomy when I was 38. Despite the ME I was OK with all except the last one. You have to really make sure the anaesthetist understands your condition and takes measures to limit any problems. When I was first ill with ME I had EBV and surgery. maybe there was a link? I do think I already had the POTS/EDS/ME/CFS/Whatever in me from birth.

My hyst. Was my 8th surgery with complete removal of everything, at age 36. I too think I've had POTS most of my life. I dont do well with anesthesia and have to make sure they give me less with anti nausea med with it. FYI, they are thinking there may be a connection with endometriosis and MCAS. I also had massive ovarian cysts. Didnt do well with any type of traditional replacement hormones. My best results came with red clover and a small amount of estriol compounded gel. My DX came after my surgeries and my symptoms for sure got worse afterwards also. But my abdominal pain was resolved and that was worth it all. It took many years for my hot flashes to stop. I was told I would have them until my normal time of menopause was to occur and then it would get better. This seemed to be true. But, many of my hot flashes were caused by mast cell degranulations and when I addressed this, the hot flashes almost stopped. When I have a MCAS flare, they come back.

Issie

[targs66]

My neurally mediated hypotension happened after my hysterectomy. However, I had health problems for years prior to the surgery; was told it was chronic fatigue syndrome. Pre-surgery, I could work a demanding job (barely, but I could do it). I also was able to exercise, tho not intensely. I now find it a major undertaking (and some days impossible) to go to the grocery store.

I had ovarian cysts, severe endometriosis and fibroids, so they took everything. I don't think it was the anesthesia that brought on my problems because I healed and recuperated very quickly. I just kept feeling increasingly weak and dizzy. It was about a year after my surgery that I started feeling the wooziness and weakness that is so devastating. I'm convinced it's an ongoing hormone imbalance - even though I take estrogen and don't have hot flashes, I have many other problems associated with menopause. I think the sudden onset of menopause just threw my entire endocrine system out of whack. I've tried different kinds and combinations of HRT without any improvement. In retrospect, if I had the choice now, I'd keep my ovaries to avoid the sudden menopause - but it's all speculation!

I'm not saying this to convince you not to have surgery, just to provide one more person's experience! I know there are a lot of women who feel much better after hysterectomy.

Best of luck, and keep us posted.

[Bigskyfam]

Wow guys thanks for your posts I know it's personal and I appreciate it. My doc is hesitant and I am to a point. I've had my dx since nov.. But have been reflecting that I've pots for a while. I had a d and c, mirena placed/ removed, 2 dental procedures with iv sedation in the past 2years. Prior to that 3 csections with years in between. I think it's connected. I'm trying to balance my gyn issue/ pots... They are neck and neck right now

[Dustbunni]

I had a full hysterectomy with partial oopherectomy when I was in my early 20's for polycystic ovaries and an unexplained uterine contraction/pain issue. I had no issues with the anesthesia that I recall. However, I had a surgery prior to the hysterectomy where I became hypothermic afterwards; otherwise I recovered fine.

For a few months after the surgery I felt great. There was no more pain and I felt like my old self. My doc thought I was some kind of poster child for hysterectomy patients. Then I started feeling just generally ill and my first serious orthostatic symptoms occurred. However, I also ruptured a disc in my lower back around that time, so other things were going on as well. I can't say the hysterectomy had anything at all to do with my current health issues. I can't say for certain it didn't though.

[lynnie22]

I had a hysterectomy and two years later, an oopherectomy for the remaining ovary. I was sick with what was diagnosed as CFS before these surgeries. But I did not become sick after them. However, when I had a thyroidectomy back in '07 along with a parathyroidectomy, I never felt well again and was diagnosed with POTS a couple of years later. I am not sure if it was the removal of the thyroid (never having normal thyroid hormones again) or the anesthesia used in that surgery. I had a terrible reaction to whatever they used for that. Certainly there may be a relationship.