Hey, where is Niki at?
You’ve probably been wondering, where has Niki been?? Why have there been no posts on Facebook or RA Chicks site? Well…..Some of my other health issues decided they weren’t getting enough attention apparently and took over beating me up.
If you don’t want TMI (Too much information) about female reproductive issues, I would skip the following read, especially for our Rooster readers…
If you have decided to read on despite warning here goes:
I spent Tuesday morning in the emergency room due to GI bleeding and heavy blood loss due to my female menstrual issues that has been going on since last Thursday. They discussed possible transfusions to me several times while I was there but luckily I managed not to have one this time. Yay! Apparently switching to slow release iron pills and eating healthier made my values better with all this blood loss than it was previously before!
Just got back from seeing ob/gyn and they are putting me on high dose of Provera starting today and plans on reviewing results from tests in ER before they decide what needs to be done. I have PCOS (Polycystic ovarian syndrome) so just on my left ovary had about a dozen cysts plus some hemorrhagic cysts just for fun. The ER thought I might have a uterine hemorrhage as well. While I was in emergency room, they did a lovely ultrasound with the probe. For those that have had this done when you already have pelvic pain, you will understand when I say that I wanted to punch the poor ultrasound tech every time she pushed on painful sides. Ugh.
So depending on what they see when they review the tests and results, one of the following will occur:
1. Hormone and birth control pills to handle PCOS / hormonal imbalances
2. Follow up pap and colposcopy for further investigation once bleeding has resolved
3. Medical intervention / surgery to remove cysts or problems which will require referral out to hospital
So basically I’ve been off my feet, laying in the bed, dependent on pain pills, muscle relaxers and a giant heating pad to get through the worst of this. They told me at the emergency room to take it easy, not to do anything too physical or exerting, and rest as much as possible. Not sure how those orders vary much from my regular activities but been trying to not complain much and just hang in there. Waiting on doctor to call me back with next step decision. Always fun.
I didn’t want to worry you all about what was going on until I got a better picture of what was going on myself. As far as the gastro bleed, it seems that the joining of my colectomy, where my colon was removed, may have small bleeding ulcerations again. If no improvement I will have to get another repair done in near future, which involves them taking an argon laser to close the openings. I know, I know… I really know how to have fun.
I do feel sorry in advance to the Murphster and Little Niki. Why? I was told the Provera is going to make me “very very very cranky” and sleepy. When I told Little Niki she said “Awesome. I’ll just have Daddy wake you up from now on.” lol
I will try, try being the operative word, work on catching up with all your posts, emails and messages. I haven’t been able to do much as the blood loss led to me being very light headed and dizzy. 🙁 I will try to keep you all posted. I apologize for my absence.
I hope you are having a much better week than me. (((pain-free internet hugs)))
Hi Nikki
you just worry about getting better, hope all goes well with you.
I hope you feel much better soon, Niki.
I flare every single month and it coincides with my cycle. I am anemic and have to get iron infusions about once a year. My last period lasted 2 weeks! I talked to my rheumy and Gino about this and told them it takes me 2 weeks to recover from a period and that was half my life! They are thinking of doing a hysterectomy, so who knows! Anyone else out there have RA issues linked with hormonal changes like periods? Hope you feel better soon! We are all in this together with you! Hugs!
I kno these female issues all to well! I have what’s called dysmenoreah (dysfunctional uterine bleeding disease) I have cramps that register as labor contractions and I bleed clots as big as golf balls somtimes.I also have what’s called a deformed cervix and uteris! My cervix sits to far back and my uteris tips to far forward! It was a miracle 2 of my 4 children made it through full term pregnancy! I am facing ahystorectomy now. But with RA this may be to risky! So that time of the month is strict bed rest, my RA is extremly flared during that time as well. I should buy stock in the thera care company as heating pads don’t move as we’ll with all the position changing! So get plenty of rest, fluids and avoid stress! I will b praying for you! Hope you feel bettr soon!.
Much love,prayers and hugs being sent your way.
I’ve been down this same road Niki, along with endometriosis, and I’ve had the surgeries to scrape out all the cysts and endo (twice). But being put on the birth control pills did help. I didn’t like them all that much for other reasons, and stopped taking them (hence the second surgery! lol). I think I was on depo provera or something like that? Which was a combination pill? And some of the side effects I decided I didn’t like and I was stubborn…to my own detriment, obviously. Anyway, I know the misery you’re in (well, not the full extent since you’ve got other stuff going on on top of it!) and it’s no fun at ALL. I really hope the pills will work for you and give you some relief. And if you have to have the surgery, know that it will also help give you tremendous relief (even if only temporary)…and the surgery is an easy one. Please take care of yourself and I hope you will be feeling much better soon!!
Please get better soon, I have been wondering where you were the last few days. Get better !!!!
Sorry you have to go through all that. If it turns out to be a hysterectomy, I felt like a new woman after mine. Amazingly better! Hope you don’t have to have one, but if you do, maybe it will do that for you, too.
Oh Niki…hang in there woman..just reading about all you have going on makes me hurt…it sounds corny..but try to take one day at a time…Like that’s something you don’t know…lol Would make it all better if I could…gentle hugs..Sarah
ouch..hear your pain…. isn’t amazing that our bodies think as we cope with rA then why not throw something else horrendous at us…
I had similar issues..battled with infertility (unexplained) for many years. then had truly awful heavy (really does not cover the experience or the humiliation of it happening in public)..took meds..had an ablation then finally a hysterectomy… I am so glad to not have any bleeding at all.. but hey presto hot flushes!!
I really really hope they get you sorted and the bleeding to stop and the pain eased…
Very best wishes for a speedy recovery x
ps I had a really good gynae doc..who tried the ablation first then two yrs later with the clots and bleeding recurring he suggested a keyhole sub total hysterectomy… best decision i ever made…. & apart from ther hot flushes so happy with it…
Praying that your problems will soon be resolved…take care!
God bless you. This site you created has been a place to have a voice. You take care of you and we will pray. Had all that sort of mess for years and had a hysterectomy two yrs ago.
Hey Niki – From past experience and 10 bags of transused blood – really get the facts on the Provera – I had that and it caused much worse bleeding. Did the doctor talk to you about a Mirena IUD? I have had PCOS for years and it was the best thing that ever happened for me and the only thing that really worked!
Take Care,
Jen in BC
I was thinking about you and thinking I had not seen you post in a while right before you posted the ER post. Hope they can come up with a good plan, sorry your having to deal with all this as all. ((hugs))
I hope you feel better asap. I’m sure, we’re always here if you need to vent or for support. I starting dealing with a heavy period in 2002, after an emergency, preterm birth of my youngest…I started suffering with low iron, blacked out a time or two because it was too low and then came an RA diagnosis in 2010. My cycle would hit and my energy would go out the window. Battling back pain for 11 years, due to injured discs, as a result of being in 2 car accidents…didn’t help. The pain killers, muscle relaxants and b.c. pills helped for a while. I still remember that probe…I too wanted to punch the poor ultrasound technician. Then,they found a small fibroid tumor. I had an Endometrial Ablation in September of last year. I feel soooo much better since having the procedure and wish I’d done it sooner. I pray you have a speedy recovery.
Niki, I don’t post often, so you wont know me but I do have to post today. Your website when I was diagnosed 2 years ago helped me learn and grow as a person with RA. When I needed support, you and “the chicks” were always there forme. You’ve worked so hard helping others, It time for you to worry about yourself and family. The words “I will try to keep you all posted. I apologize for my absence.” There is no apology needed. Is there anything I can do to help you? Thanks Rosie
Hi Niki, I am sorry you have been so sick and I hope you are feeling much better by now.
I want to say thank you for this website and this group, I was diagnosed a year ago with RA.sine I used to work with people who had RA and have a great Aunt and a younger cousin who suffer from it, I was very upset, worried and felt isolated about it. No one wants to hear what is going on and even when they do, they cannot relate. Anyway, I am grateful to have come across your site and your group and thank you for sharing your experiences.
all the best to you.
Hi Niki, I am sorry you have been so sick and I hope you are feeling much better by now.
I want to say thank you for this website and this group, I was diagnosed a year ago with RA.sine I used to work with people who had RA and have a great Aunt and a younger cousin who suffer from it, I was very upset, worried and felt isolated about it. No one wants to hear what is going on and even when they do, they cannot relate. Anyway, I am grateful to have come across your site and your group and thank you for sharing your experiences.
all the best to you.
Sandy
Sorry about the sine instead of since. I am using my iPad and together, we spell very badly.
Sandy
So sorry to hear you have been sick. I am new to this and did not know there was a site for RA. So pleased to have found it. I was diagnosed a yr ago this last May and I was 73 yrs old. It sure was a shock to find out that is what I had. I am doing well under my Dr’s care and our family Dr. I live in Boonville, NY and winter in Englewood,FL. The weather there is much better than here with all the rain and cold. Wish you the best.