Debilitating menstrual pain: Not sure what to think

I've has debilitating menstrual pain since I was a teen and it's only progressed to causing me to pass out from it being so severe. Every time I end up in the ER with the dr telling me it was probably just a ruptured ovarian cyst (every month?).
I had a laparoscopy to check for endometriosis which came back negative. That dr advised me to go to counseling and prescribed antidepressants because I was creating the pain in my head since she couldn't see anything wrong.
I've tried birth control pills and the depo shot in the past but both made me almost bipolar.
Every month I can expect migraines at the beginning and end of my cycle and pain that would leave me bedridden if it weren't for needing to care for my kids. And I tend to beg my husband to do a hysterectomy himself by day 2. Aside from the migraines and pain, my periods are otherwise typical.
After reaching my limit last month, I went to my gyno begging to take it out and without any further discussion, she gave me a referral for a surgical consult. That was yesterday and consisted of explaining his experience and type of procedure but that was basically it.
Every month I go through this cycle of begging for a hysterectomy and then wondering if I was being over dramatic when it ends. Kinda like childbirth. Once it passes, you (or at least I) wonder what all the fuss was about.
After reading through the different forums, I'm beginning to wonder if I should be doing anything before going straight to surgery.
Any advice would be great, please!

Hi, Cathy

What you've gone through sounds horrible.

I think many of the ladies here have gotten to the point where we just want a hysterectomy so the offending organ is out of there. Heck, I've been there more than once!

It is a major surgery though, so I would suggest you try to get a second (and maybe third) opinion before you go ahead with it. It doesn't sound like you've had enough/the right attention to get a diagnosis or medical plan that is helpful for you. See if you can find at least one other gyne who can take a look...or go through as many as you can until someone can properly diagnose you and let you know what your options are other than managing the symptoms.

It may be tempting to reach in there and remove your uterus yourself, but it'll be better for your long-term health to find a medical team who is willing to walk the journey with you.

MJ

I go through this same thing all the time. I have horrific menstrual pain, but also have it at other, seemingly random times. I'm quite certain my husband is getting very tired of statements like "just take it out" or " bring a scalpel and soldering iron home from work with you".

I have also been to the ER several times. Not lately, because it's become clear to me now that it's pointless (here at least). I talked myself out of the ER on so many occasions. Ended up going a handful of times (generally when my mom was in town and was convinced I was dying). The first few times, they were sympathetic and at least looked into things a bit. I was given an ultrasound and some pain medication. The last 2 times I went did not go well. The final time, a doctor came in after 6 hours in the waiting room and another 2 in an exam room and told me that he could give me a CT scan, but that every time you get one, it increases your cancer chance exponentially--and went into a long diatribe about the whole thing. I was unsure how I should respond to that, but told him that I only wanted to know what was wrong and to feel better, and that however he thought that could be accomplished, I would be ok with. He responded by leaving me lying there for another hour and then discharging me with a recommendation for some Advil and a visit to my doctor...

The last time I saw my gyno was for a follow up appointment after my 3rd surgery. Long story short, it did not fix my problem. I told her that everything that had been going on before the surgery still seemed to be happening...even mentioning that I was hopeful that perhaps if I gave it a bit more time, things would work out. She then looked at me as though she'd never heard this before (I'd been seeing her for nearly 3 years at this point) and asked me how long this had been going on...as though she hadn't heard a word I'd said in all this time.

I broke down in her office crying about how I just wanted to be me again and not be in pain all the time, and told her that I had begun having anxiety over leaving my house because I was never sure when the pain would hit--she responded by telling me that maybe the anxiety was causing all the pain and that perhaps I should see someone about it...

I can't tell you what to do, but I can tell you that I have had the same moments on my good days of thinking maybe, possibly, I'm over dramatizing or exaggerating things, only to be proven time and time again on my bad days that I am not. I have not seen a doctor (including the ER) in over a year. The doctor who performed all of my surgeries has since moved away. I'm ok with not seeing her again, but am not sure about seeing anyone else in her practice--which is the only women's clinic here--and I saw another doctor there while pregnant who I abhorred.

I'm not saying that a second opinion isn't a good idea. I think it's always a good idea. But in my opinion, if you have found a doctor you trust, and I hope that you have, I would go with it. My doctor gave me guesses of many different conditions, including endo and adeno (none of which have been confirmed) and even told me that my next step would be a hysterectomy if the last surgery didn't work, only to renege on that at my post op. I truly hope that you get the help and relief that you deserve.

Danielle

Thanks ladies This will be the 5th dr I've seen for this and the first to not try to convince me that this is in my head. I asked about other options (ablation, etc) and he (we) decided that whether this is missed endo, adenomyosis, pelvic congestion syndrome, or just really painful periods, that a hysterectomy would be my best bet as birth control makes me crazy, I've done physical therapy, and other procedures (ablation, d&c, etc) would not certainly take care of the pain. He says that since my husband and I are done having children that if my uterus is the problem, then we'll just remove the 'problem'.
He agrees that this is major surgery and not a decision to made lightly but after reviewing my records and talking to me, this is a quality of life issue now.

Hi Cathy

It sounds like you've been super thorough with all of your research! It's good to know your doctor isn't pushing you into anything either.

Quality of life is huge. There are so many discussions here about women trying to manage their symptoms while still going about daily life...and it's not always easy!

Are you planning to set a date for surgery soon?

MJ

Hi Cathy,
Did any of your doctors attempt any treatments other than the laparoscopy and birth control pills? More importantly, do you feel that you've explored and exhausted every reasonable avenue before going ahead with surgery? It's good that you have a doctor who is willing to listen and to perform a hysterectomy if that is what you truly feel must be done. I had great difficulty finding one and had many obstacles thrown in my way for years.
I know that it can be extremely frustrating not to be listened to and not to have any apparent reason for debilitating menstrual symptoms. I got my period at age 11 and began having serious problems by age fourteen. By sixteen they were debilitating, and by eighteen they were so bad I couldn't go to school or work during the worst of it. I never passed out-although I wished many, many times that I would lose consciousness because it would have been merciful. The doctors couldn't find anything wrong. I also had an exploratory laparoscopy when I was 20. That doctor (who was not the first I'd had) believed I had endometriosis until the laparoscopy showed pink, perfectly healthy tissue and no sign of any disease whatsoever. Then he concluded that it was all in my head. A string of other doctors concluded the same thing-that it was all down to a combination of genuine but normal cramping and catastrophizing the pain due to emotional issues. I made the mistake of admitting that I hated my periods, didn't want to deal with them and wanted my uterus gone (the first time I asked for a hysterectomy I was eighteen and boy, did that not get a good reception....)
It didn't help that none of the pain relievers worked on me. This further led them to conclude that it was impossible for pain relief not to touch the pain and that this was further "evidence" that it was all imagined and that if only I had proper psychotherapy and learned to accept that periods and fertility are part of being female and to view them in a more positive light that I wouldn't have such a hard time of my periods. That's only a slight paraphrase of what one of them straight up told me.
To make a long story short....
I turned out to have an extremely rare genetic disorder called Ehlers-Danlos Syndrome. I don't metabolize drugs/chemicals normally because of it and pharmaceutical pain relievers simply don't work on people with this condition-which is particularly unfortunate given that it comes along with high, sometimes unbearable, levels of chronic pain. No one was ever able to find a definitive reason for the killer cramps-even the eventual partial hysterectomy didn't find anything serious enough to explain it-but 90% of women with EDS have horrible menstrual problems and a remarkably high proportion end up having hysterectomies at young ages. From all that I've read and experienced I believe the most likely explanation was/is mechanical malfunction of the uterus and cervix resulting in a greatly impaired ability to expel the blood properly-and therefore to agonizing cramps. This isn't something that would have shown up on any scan or test that was available. My periods also got longer and longer-they started out frustratingly long even at age 11, began to show up twice a month sometimes when I was around 22, and I was regularly having 19 day periods with bleeding, a few "dry" days in the middle somewhere, several more days of bleeding and sometimes even a third round of this before I got a week and a half or so to recuperate before it started all over again. That was apparently due to a bleeding disorder, but I didn't find that out until years later.
Anyway, I had to decide what to do with no real information about the actual cause of the issues. By then I had exhausted every possible option, including a failed endometrial ablation that only bought me several months of a more manageable 7 day period before it spun out of control again. It was very clear what needed to be done-which was what I had been asked for for nearly 10 years at that point anyway. Fortunately by then my GP referred me to a doctor who was willing to do it.

	Quote:
Originally Posted by Cathy322 ...That dr advised me to go to counseling and prescribed antidepressants because I was creating the pain in my head since she couldn't see anything wrong....

Cathy,

We must have had the same doc When I got the suggestion for guided imagery with a psychologist to control my pain (pain doc acknowledged was worse than labor pain), that was the day I knew I could never see that doc again. After getting 5 opinions, I went with doc #5. Much like you I had severe monthly pain since the beginning, but when I reached about 35ish, it got worse & worse. I sucked it up for almost 10 more years & then cried "uncle" & sought help. After more than a year of varied, failed treatments which increased the frequency of my pain from a few days a month to nearly everyday, I couldn't take it anymore.

Unfortunately, the ONLY doc that believed a hyst was the way to go was the one who witnessed my severe episodic (pain came multiple times a day in15-40 minute episodes) suffering after what became my final alternative treatment (Lupron). Endo and adeno were suspected, though no adeno was found in pathology. Fibroids were present as well as cysts and a fallopian tube filled with numerous cysts. Whatever the cause of my pain was, the hysterectomy worked for me and I have not been in that god-awful pain since the day before my hysterectomy.

If you feel you have exhausted all alternatives and this is significantly impacting the quality of your life, I fully understand and can relate to your decision. My quality of life was horrible: missing work, missing holidays, missing special family celebrations/occasions, painful sex which ultimately meant no sex, and no over-the-counter pain killers, codeine, vicodin, tramadol, morphine, percocet, or fentynol could stop the pain or even make it tolerable.

My doc was hoping to find adeno in the path report & so was I so that it would explain the suffering. I was disappointed it didn't show up (I think doc was too) but I am so glad it is gone. And though this was a horrible journey, I am glad I found a doc that did not believe anyone should suffer the way I was after more than a year of failed treatments. It sounds like you have found one of those blessed , and if your not ready now, just keep him/her as your gyn so you don't have to go through more drama/convincing when you are ready.

As for all the other sisters who posted here, I identify with so many things many of you said. If alternative treatments don't work then when you are ready, you will know it. I wish you all well