kitshalleen Posted June 30, 2008 Report Share Posted June 30, 2008 Hi gals,I hope that everyone else is doing okay. I am completely desperate.I am 32 and thinking about a hysterectomy because of my terrible incapacitating menstrual cramps. I do not have endomentriosis, fibroids, or anything wrong (besides POTS). Anyway, I have a chronic headache from the POTS and the hormones from birth control pills make me much worse during my non-period days. The hormones also seem to increase cramps during the non-period days. It is weird.I have tried a bunch of anti-inflammatories which help mildly and even vicodin, but nothing works enough. I'm at my wits end. Does anyone else have this problem with terrible menstrual cramps and not being able to tolerate the birth control pill? Any ideas out there, before going through a surgery. Thank you so much.Julie Quote Link to comment Share on other sites More sharing options...
Csmith3 Posted June 30, 2008 Report Share Posted June 30, 2008 Sorry to hear you are suffering. I could have written almost the same email several years ago. I then had Depo injections which stopped my periods (after about 6 - 12 months) and also reduced my headaches which was an unexpected bonus. Unfortunately, my doctor wasn't comfortable with me having injections for more than 5 years so I had to find an alternative. I now have an implant (Implanon) which still deals with the painful periods and headaches, but I have had a lot of irregular bleeding which has been a bit of a nuisance. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted June 30, 2008 Report Share Posted June 30, 2008 Wow, we're on the same cycle. My gynocologist has me take vitamin e and evening primrose oil all month, avoid caffeine (other than my one cup of java in the am), and then for the week, double the dose of primrose. It does seem to help, but this month, I didn't have any more of the vitamins and thought I'd be fine. HA!!! NOT. I feel like someone's been stabbing me in the lower back for 3 days now, and the front is no picnic either. My gyn has wanted to take out my uterus for the past several years, but I refuse b/c the loss of natural hormones can be worse for us POTSy's than for the typical population. Hang in there and I hope you find something that helps.Sometimes a hot water bottle feels good for me, other times, an ice pack. It appears to be trial and error with me. Quote Link to comment Share on other sites More sharing options...
mkoven Posted June 30, 2008 Report Share Posted June 30, 2008 I've hear that you can get the uterine lining ablated, still keep your uterus and ovaries. For me this doesn't sound appealing, because the cramps and bleeding aren't the issue.It's more the hormonal swings which wouldn't be eliminated. Quote Link to comment Share on other sites More sharing options...
pamyla Posted June 30, 2008 Report Share Posted June 30, 2008 I have similar issues with not being able to tolerate the pill and having horrible cramps. Sorry to hear you have to deal with that.Have you had your magnesium levels checked? I read somewhere (sorry don't remember where) that there is a link between magnesium and cramping. As far as personal experience, my levels were really, really low and I went for a few IVs that included magnesium. It improved my cramps a lot, so I've been trying really hard to keep up the oral supplementation, although nothing works as well as the IVs. good luck,Pam Quote Link to comment Share on other sites More sharing options...
Ernie Posted June 30, 2008 Report Share Posted June 30, 2008 Hi,I am on Depo provera right now and it is helping me very much. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted June 30, 2008 Report Share Posted June 30, 2008 I should mention that I had a D&C a few years ago, which helped with the cramping for about a year, but then the issues returned. Quote Link to comment Share on other sites More sharing options...
Sophia3 Posted June 30, 2008 Report Share Posted June 30, 2008 I refused to get a hysterectomy for YEARS due to horrible flooding/cramps. When I turned 50 I finally gave myself a gift of a partial hysterectomy.Kept my cervix..and of course my ovaries. I have hormonal pms at times but that's still better than YANKING out the ovaries as menopause can worsen symptoms and Dr. Grubb warned me of this as he learned my pattern over the years.My hysterectomy was done by a superb surgeon gifted in the laparascopic hysterectomy version. I was in and out of hospital in 23 hrs. Had I known this surgery was so easy, I would've done it years ago.I do not miss the monthly flooding and cramping. I thought it would help my POTS but did not (in my case) BUT I do not miss ruining clothes and sleeping on towels every month or buying overpriced feminine hygiene products.I almost did an ablation but talked myself out of it and they have a high failure rate that few doctors will admit before surgery.You have to examine your OWN situation and listen to your inner voice. Do lots of homework.And do NOT let a doctor INSIST on taking out your ovaries. Mine wanted to but i said no. If the PMS would get worse you can always go back and have them removed.But ONCE you remove the ovaries it can be IMPOSSIBLE for "some women" to adapt to hormones...even so called "bio identical" because we are still putting SOMETHING into our bodies in addition to what is going on. I have had that discussion with my ANS doc who is an endocrinologist for years. Many years ago I did tiny doses of estrogen a couple weeks a month and that helped with cramps. But later, added to bleeding...so we all have unique situations.I hope you can figure yours out.Good luck. Quote Link to comment Share on other sites More sharing options...
kitshalleen Posted June 30, 2008 Author Report Share Posted June 30, 2008 thanks so much for the replies everyone.i definitely won't have my ovaries removed. i'm 32 and that would put me into instant menopause, and worsen the pots. i know that even a partial hysterectomy will nto help with monthly headaches because i still have the hormones, but it would help with the crampig. fortunatey, i don't have pms, sothat won't be a problem. i've looked at info about where they just remove the lining of the uterus and it seems that it does have a high failure rate. i don't have heavy bleeding. that's not my problem. i just have heavy cramping. anyway, i'm seeing my gynecologist next week but hopefully talking to him soon. he's not insisiting on anything. he does think outside o the box.however, i just can't deal anymore. i just tried the nuvaring, and am still having horrible cramping even though i took it out after 6 days. ugh. talk about desperate.haven't we all been there!happy summer and staying in the hosue to avoid the heat. it's prettyn seeing all of the birds outside though.julie Quote Link to comment Share on other sites More sharing options...
kitchmill Posted July 1, 2008 Report Share Posted July 1, 2008 I started seeing an acupuncturist for my migraines and it turnes out that an added bonus was that he was able to add a few pins to my stomach and all but get rid of my near-pass-out cramps. It also lightened my period significantly. I used to have to have my husband carry me to bed when the cramps would hit because I would get so close to passing out. A few sessions with the acupuncture lasted about 5 months and then I had to have it done again, but it's so much better than any medication I've tried! Quote Link to comment Share on other sites More sharing options...
beth27 Posted July 1, 2008 Report Share Posted July 1, 2008 I found out a supplement called Vitex... its a great supplement for regulation of periods andhormones... i got off birthC and has horrrrrrible pms, etc... this has regulated everything.. it works slowly, so take it continually and after a month start noticing improvement. I get it from www.i-herb.com and type in referral code BET772 to get $5 off....the vitex is only $3 something..... real cheap! Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted July 2, 2008 Report Share Posted July 2, 2008 Hi,Have you seen a gyno. or dr. that specializes or is familar with all avenues to try, such as homeopathic alternatives, patch, injection etc.Or a pain management dr?Not sure... Quote Link to comment Share on other sites More sharing options...
JaneEyre9 Posted July 3, 2008 Report Share Posted July 3, 2008 This may be something you've done already, but regular ibuprofen started *before* my period really helps cut down on the severity of my cramps. If I wait till I have cramps already, it's too late. I start Motrin usually 3-7 days before flow and continue through the heavy flow. It's made a big difference for me. Kristen Quote Link to comment Share on other sites More sharing options...
kitchmill Posted July 3, 2008 Report Share Posted July 3, 2008 Hi,Have you seen a gyno. or dr. that specializes or is familar with all avenues to try, such as homeopathic alternatives, patch, injection etc.Or a pain management dr?Not sure...My acupuncturist is a pain management specialist. He's an MD in addition to doing acupuncture... the only reason I went to him! Quote Link to comment Share on other sites More sharing options...
morgan617 Posted July 3, 2008 Report Share Posted July 3, 2008 I had a tubal when I was 30 and at that time there was no endometriosis at all. But from my first period to my last, they were just awful. I was also a heavy bleeder, but it wasn't the bleeding that killed me, it was the cramping, diarrhea and all that stuff. I was absolutely miserable every single period.I finally had a hyst at 31. They wanted to take my ovaries "if neccessary" I said no way. When they got in there I was full of endometriosis (this was a year later!) but I had a lot of other stuff going on that was causing all the pain. I continued to have cystic ovaries and hormone stuff, and still do darn it, but I never regretted having the hyst for one second.People who are completely against having surgery to relieve suffering may or may not have the suffering, but I can't believe anyone who really wants to die once a month would ever miss that pain. I'll take anything I can to help, since there is so little they can do about most of my stuff. However, this is definitely a personal decision.I think if ablation is done correctly, it is very helpful, but if your problem is not bledding, but pain, I'm not sure ablation is your solution anyway. it is typically for very heavy bleeding. Whatever you decide, good luck sweetie...morganp.s. my sister is one year younger than me (I'm 53) and the doctor's been trying to get her to have a hyst for more years than I can remember. Some people just can't do it and that's okay.... Quote Link to comment Share on other sites More sharing options...
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