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Endo/fibro/arthritis

May 06, 2016 9:56 PM

So I have endometriosis that causes flares so severe that I can't move, sit down, have a BM, etc. For the longest time I thought it was just my back pain arthritis issues until it got so bad that it put me in the ER. My previous OB/GYN was going to perform a hysterectomy but my insurance changed and now my new dr won't do it bc I'm only 34. But I never have periods. I'm on continuous birth control to prevent periods and help regulate my hormones due to endo and PCOS. Anyway, I'm always stiff and hurting either bc of my arthritis or the fibromyalgia and then the flare ups come either because of over exertion (fibro flares) or OB/GYN issues (endo/PCOS). So my question...can I or should I push for a hysterectomy given my other health issues or just continue to expect the unexpected and deal with the pain when it comes?

May 06, 2016 10:14 PM

I had terrible pain but to having a ton of fibroids. My doc knew me for years and offered a partial hysto at your age. But, I was the sole income for my two sons, so I couldn't afford to take time off. The doc would write me a script for just a couple good pain meds per month. As the years went by, I went into Premenopause. The fibroids went away, and I have no pain or period for like 2.5 years now. But, I never had endo. That's a whole different ballgame. *gentle hugs*

May 07, 2016 7:04 PM

I just recently have been diagnosed with RA. It started when I went into premenopause. All this time I thought it was a phantom pain until my Rheumatologist told me differently. That what I have is an autoimmune desease. I wanted to cry right there in her office. I had to have 13 vile of blood taken plus x-rays to see how far along this is. I will find out my results this week coming up. I'm still trying to wrap my mind around this whole thing. I'm still trying to live as I did before I found out but my body feels different know since I now know. The thing is I'm only 41 years old. I'm in full blown menopause now RA. Yes I'm definitely feeling some sort of way about this whole thing. Some days I'm fine other days my pain and fatigue is unbearable not to mention other ailments. Well my doctors says writing it down sometimes helps and honestly is do feel a little better.

May 07, 2016 9:22 PM

I have osteoarthritis and rheumatoid arthritis along with lupus thyroid disease, along with countless other diseases. But, I noticed I get a major flare up when I'm PMS. I know your pain, do it! If you feel this will help the quality of your life do it! I'm getting a hysterectomy and I can't wait, however you still may cramp so look into other alternative!

May 08, 2016 2:55 PM

Cassi33, I've had endometreosis since 1985, Arthritis since the 90's, and fibro since 2007. I truly empathize with you in your suffering. I had a diagnostic laparoscopy, twice between 1985-1987, a hysterectomy (endometreosis & hemorrhagia) in 1995, an bilateral oophorectomy (fibroid tumors), and a paraovarian cyst removed in 2010. Each time they've found endometreosis inside my pelvis. So having the hysterectomy did not alleviate my endometreosis. I can't advise you what decision to make, but you should speak with several surgeons to make an educated decision, knowing all the pros and cons. Make a list of questions to ask each one. Research others experiences.

My experience has not been a good one. If I could turn back time, knowing what I know now, I would never have let them take my uterus out. I have pelvic floor dysfunction that affects my bladder, bowels, and sexual function, as well as pelvic congestion syndrome (varicosities in the abdomen and thighs that cause pain). I also have a prolapsing bladder and rectum because there's nothing holding them in the proper place. I can't stand, sit, or walk long. But this has been my experience, and not everyone's experience is the same. Hugs & prayers that you will know what the right decision is for you when the time comes! 🙂💕🙏🌼

May 10, 2016 12:18 AM

I can fully appreciate what FlappysLady is saying.
Somethings you can not undo what is done, taken or removed. Sometimes problems continue or are something else. I got a second opinion. May 31st I have laparoscopic surgery to remove right ovary fore sure for a growth that is not going away and increasing in size. Depending on damage they may do a total hysterectomy. The gyne doctor thinks I have endo. This will be confirmed at this time. The pain has been nasty, miscarriage / birthing level. It is worse the last 1/2 year. I have done lots of different medications for pain. Leaving me high with excruciating pain. I have a history of painful periods. I had to wait months for OR date. I was desperate and knew I didn't want to do Lupron. So tried everything before that desperate day that I went on Lupron ( for me the drug from hell and still dealing with side effects after stopping. ) Since my last visit to gyne they said that because of my history of multiple pain issues, mood, major depression, anxiety it would be best to try to keep my left ovary so I am producing my own hormones which may be important for balancing my mood. The surgery may help BUT no guarantee. I have been on different types of hormone therapy and that did not work out.
I am 47. I have had 4 miscarriages, one pregnancy that I gave up at 5 months because it didn't have a brain and deformed. #5 pregnancy turned out 😊
I have fibro and other issues. The fibo has gone wild in the past 11 months.
I am onto the next chapter of my life.
You are young, I hope that you can be as comfortable and as well informed as possible to what well be best for you. It is a tough decision for sure. It is up to you.
Sincerely, Beets

May 10, 2016 9:51 AM

Beetsrgood, I will be praying for the best outcome for your surgery, and that you have no complications! Part of my problems stem room development of scar tissue, both internal & external, like keloids. The removed both my ovaries in 2003 because cysts formed on both. The left cyst dissolved on Depo injx, but the right continued to grow despite 2 injx, so they took both my ovaries. I truly hope you can retain your left one; natural hormones are best. I'm so sorry for your miscarriages. I've had one, then 2 births. I thank God for them! When they took the paraovarian cyst out in 2010 they said it likely grew from miniscule ovary cells left behind (like cancer can do). Unfortunately for me no one listened to my complaints of pelvic pain and bowel/bladder issues, passing it off as my IBS. It wasn't until the mass began to bleed through the vagina hat an ultrasound was used, and the tumor was found (10+ cm). The one thing I've learned through all my experiences... Get a second & third opinion if docs aren't listening, and before having any surgery. Hugs & prayers for you & Cassi33, as you go through your surgeries that all will go well! 🙂💕🙏🌼

May 11, 2016 11:39 AM

I am 28 recently diagnosed with fibro. I've been trying to conceive second baby for last six months. I have pelvic almost whole month but gets worst when ovulate to the point of can't stand up straight and hurts to sit (mayb rectal pain not sure). Dr. Is seeing me on Wednesday to do ultrasound he's think mayb endometriosis. Do u think it could be just the fibro and could this be causing infertility????

May 11, 2016 12:12 PM

They will blame everything on fibro. Don't let them. You have something else going on. Find a distraction and try not to stress about it because stress makes it worse. Hopefully the doctor finds something easily fixable.

May 11, 2016 1:18 PM

FlappysLady thank you for all your thoughts. 🤗

Ktt19. Just to let you know, Endometriosis or fibro is not diagnosed by ultrasound. But ultrasound may be a good start to check for other things. If you are having problems getting or keeping a pregnancy I think it would be ok to see a gynaecologist. I agree with gotobef. 10+ years ago they denied that I had fibro, now they blame everything on my fibro.

Beets.

May 11, 2016 2:28 PM

What does it mean if both wrist hurt?

May 11, 2016 3:21 PM

As I read through your comments, all, I relate to your pain for myself and for my DD. But the names and facts go into my consciousness and right back out again! So I'm apologizing if my posts here seen "off"😲. I'm 59, started menopause at 42. Glad to be through PMS 25 days/mo and that I didn't get the hysterectomy my GYN suggested at age 34, because I 'had four kids.'

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