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Chronic Pain
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Posted 8/9/2013 6:20 AM (GMT 0)
Hi ladies.

Just have a quick question. As you all know. I suffer from chronic pelvic pain, ddd and a few other conditions that pretty much make me want a body transplant.

For a 26 year old its tough going and I find myself in really bad days during different times in my cycles.

Usually I would run my birth control everyday for 3 months then have what's considered a small period. Then it's back to 3 months again. However, lately I have found that no matter if its the 3 months then a break or every month and then a break, During my "period" I am doubled over in the worst pain by far. Periods used to be light and last maybe 3 days 4 at the max.

Everything multiplies and nothing really helps. I have tried to see both my pcp and gynecologist however it's not happening and it's getting increasingly difficult for me when these 8 days of non stop pain.

Heating pads, ice packs, depo lupron therapy for a year in 2012, anything and everything I could. Nothing works.

They are now heavier and very very painful. I do suffer from endometriosis and did have my most recent surgery last November for it. I know it comes back as I have had it for several years now. It's just getting to where my doctor have said that there is nothing they can do short of a hysterectomy. I'm 26. Have had multiple pregnancies and have no children. I want a family and can't because of my health.

I guess I need ideas of how you control your pain? As my Meds now aren't even touching it. I want a permanent or even semi permanent fix. Depo lupron is not an option anymore as I couldn't handle it. I tried the iud mirena and it made everything worse. If any of you have ever been through this... How to get my Drs. to listen to me?

Please help!!!

Post Edited (PerfectDisaster86) : 8/9/2013 12:23:43 AM (GMT-6)

Posted 8/9/2013 10:54 AM (GMT 0)
No replies or advice?? :(
Posted 8/9/2013 11:08 AM (GMT 0)
I don't have any good advice. I do get worse when I have a period as well. I did the three month pills. Recently I switched to Mirena. How long did you give it? How did it make it worse?

You can take the three month bc control and then skip the seven day pills and start the new three month pack so you do not need to have a period. I would check with my dr before doing this though. I was actually on Seasonique so long I didn't have a period at all between packs. This was even though i did take the "inactive" pills. My dr said that is a common occurrence. That a period is not necessary. It just is a way to show a woman she is not pregnant.
Posted 8/9/2013 11:15 AM (GMT 0)
Hey. I tried mirena twice. First time was a year. Second time was about 3 months.

Sex was impossible without me crying. It felt like it moved whenever I had a bm or if my partner was in me. (Sorry for tmi).

I had to have a DnC to remove it. I had a lot of ovarian cysts. Mood swings. Weight gain with it.

I have tried the birth control pills but I still bled a little. Now it's like a never ending waterfall and excruciating pain. Almost like someone is ripping my uterus out.

The depo lupron shot was worse again. It caused major issues with me.

I'm going to try and see my gynecologist as I can't function with this. I have been in tears and in a ball for nearly 36 hours. It's really bad.
Posted 8/9/2013 11:18 AM (GMT 0)
I'm upset and really am just worried and lost because of the pain. I don't understand why my other issues are flaring up this extreme with it. When walking to the bathroom I'm doubled over and my husband literally has to almost drag me to get in there.

I'm so sorry for the tmi and complaining. I'm just scared I guess and in a lot of pain.
Posted 8/9/2013 11:21 AM (GMT 0)
I wish I could offer some advice. I used to have regular cycles while on the pill, then they got bad after a while. I started depo-provera about 18 years ago and haven't had a period since (with the exception of one when I attempted to go off the depo-provera, but they started back up bad so I went back on it).

I hope you can get some help and relief soon.
Posted 8/9/2013 11:24 AM (GMT 0)
I'm on the UC board a lot. Nothing is TMI over there. =) I am sorry you are in pain. Can you take NSAIDs? A trick one of my drs told me to get through pain (if it doesn't interfere w your other meds) take two Tylenol and two Advil or Aleve.

I do not know why hormones make things worse. A lot of drs still won't even recognize they do. My UC gets worse during my period as well as my pain. Maybe a heating pad. If you don't have one you can put rice in a sock tie it off and microwave it for like two min and it will work as a heating pad.
Posted 8/9/2013 11:25 AM (GMT 0)
PD,

Unfortunately, I'm well versed in health issues, which includes female issues.

When you say you've tried to see your GYN but it's "not happening".... is it you can't get an appointment? Can't get appropriate help? Because that's where you need to start to figure out a plan and proper treatment.

I think others have shared this thought on here.... but a hysterectomy does not necessarily help endometriosis. I've just heard of several women thinking this drastic of a thing was the answer, only to find out it didn't help at all... and actually caused further issues.

I had a horrible Mirena experience myself (I know some love it, so of course - just my experience). I had it put in to control heavy bleeding at the end of 2011. It not only didn't help, it made things worse.... and it ended up coming out on it's own 3 months later. Thankfully, I've had a tubal ligation and wasn't using it for birth control.

As I don't even have my own issues controlled, I can't offer any real advice... other than to say that you need to have a GYN that is listening to you and helping you w/ this. Are you able to switch doctors?

At 26 - if my GYN was saying "There's nothing to do except a hysterectomy" - I would be walking out the door.

If you don't want to answer this - no worries.... but when you say that you can't have a family because of your health issues, are you meaning the endometriosis or all of your health issues combined? I have two family members that both had pretty severe endometriosis and were able to have successful pregnancies. It wasn't easy and one needed help in actually getting pregnant - but both were able to carry babies to term.

Hopefully others will have more input - but I would definitely try to find a doctor that will really try to help you w/ this issue.

--Tina
Posted 8/9/2013 11:26 AM (GMT 0)
Just a side note that several posts were added while I was typing, lol.... smilewinkgrin
Posted 8/9/2013 1:38 PM (GMT 0)
I was about to ask the same thing: When you say "it isn't happening," what do you mean by that? If you are in this much pain, it sounds like trying to just suck it up and deal with it on your own would not only be painful but potentially dangerous.

I would get into your gyn in particular, pcp if you cannot, and even if appts are booked out, book it, wait, and get on a list. However, I'd mention that this is urgent care, you need an immediate appointment. If they (one or both) cannot offer help, find new physicians who will treat you and take you seriously.

"Not happening," is "not acceptable."



Sookie
Posted 8/9/2013 9:26 PM (GMT 0)
Thank you for all the replies. The not happening with the doctors was that they don't really have anymore options for me. My husband got me in to see my ob-gyn today. FINALLY!!! Lol.

She gave me 3 choices. Switch birth control. Do a study that's similar to lupron for a year. (It will be a pill format taken every day). Pregnancy or hysterectomy.

I begged her to just go back in and clean out the endometriosis. I'm unable to stay pregnant. That's what I meant with other issues. Plus some of my other health conditions and medications make it impossible to even think about pregnancy.

My heart is broken. I have had many angel babies and we would love a child of our own. However, we are just not ready. We have just started on the right pathway to getting our lives together and achieving some of our goals.

I accepted the birth control change. I have also scheduled appointments with a GI dr and also a urologist. Hopefully someone will be able to give me some darn answers!

My period is still extremely heavy and I'm back in bed with a heating pad on. I smothered my back and hips in icy hot. Tried to eat but just kept throwing up. So have taken some meds and am attempting to have a nap but as you can see from me typing on here. It's not going so well.

My weight loss is crazy. Even the dr pointed it out. I don't know what to do or think anymore.

I just wish I was stronger and my health wasn't so complicated. It's as if my body feels the need to just not work with me. Lol.
Posted 8/10/2013 12:26 AM (GMT 0)
PerfectDisaster

I don't have anything to add as far as advise. I just wanted to tell you that I'm so sorry that you can't stay pregnant, and have lost your babies. I'm in the same situation, as far as being able to stay pregnant. I lost all four of our babies. I totally understand that you're heart broken. I am too. I always dreamed of being a mommy, and I can't keep my babies here with me.

I sure hope that switching birth control will give you some relief from the pain, and also slow the period down.

love and hugs
Loretta
Posted 8/10/2013 12:26 AM (GMT 0)
Hopefully the switch in BC helps. Times like these are when I hate all the BS around pain meds most...suffering sucks (major understatement I know!)

Have you tried Nuvaring? It's supposed to help with heavy periods as well, sorta like Mirena except that its a ring inserted into the vagina vs something implanted into the uterus. Just seems like the less scary of the two!
Posted 8/10/2013 12:43 PM (GMT 0)
I just saw an advertizement for a new study. It's "violet petal" It says its a study/trial for severe endometriosis pain. Thats all I know, maybe google it?
Hope you get relief,
Lesley
Posted 8/10/2013 7:39 PM (GMT 0)
That is what the pill form of lupron therapy that she is saying I will be doing if the bc pill fails.

Talked the children situation with hubby over. He wants me to go get a second opinion about the endometriosis. He doesn't feel that I should have to have meds or hysterectomy as options at 26 when I haven't had a child survive yet.

I kinda agree. I love my ob-gyn but maybe a second opinion wouldn't hurt? What do you guys think?

I am happy though. As the new bc pill she prescribed is free for me. My insurance completely covers it. So that makes me happy.

The nuvaring is not an option for me. I have tried depo provera, Depo Lupron. Other birth control pills. Laparoscopies. I tried mirena TWICE and my body still hasn't fully healed from it.

I don't know what else I can do to be honest. Oh well. Just have to suck it up I guess. :(

Thank you everyone for the advice, the comments and well wishes. I do appreciate the support. I am sincerely happy I stumbled upon this website.

It's nice to know others go through issues similar to mine and that even if family, friends or drs don't always understand, that I do have some support on here. xx
Posted 8/10/2013 8:15 PM (GMT 0)
I have many back issues and as I've gotten older my periods have gotten stronger and he pain is almost unbearable. My doctor put me on a bc pill that restricts your period to two days. And she gave me some muscle relaxers which don't touch the pain. What's nice is that my cycle starts on a Saturday and ends on a Sunday so I can stay in bed.

Good luck! I hope this new bc helps you.

Michele
Posted 8/10/2013 8:32 PM (GMT 0)
Hi, I was in your shoes and I had to have the hysterectomy, unfortunately. And even worse, it didn't take my pain away. But... It did take away my periods and that has helped. I'm sorry you are suffering as well. I know many doctors are afraid to go in too often to clean up enough because of scar tissue. I've had mine cleaned up four times total and it does bring relief afterwards but its very short lived.

I hope you get answers soon and if you fins any tricks, please let me know!
Posted 8/10/2013 8:45 PM (GMT 0)
Maybe I'm being stupid. But I have several surgeries now. And I know I will require one for my gallbladder. I just feel that although the "cleanup" would be short lived. It would help out so that I could have a few more months of trying to build up more core strength so I wouldn't have to be on as many meds.

I want children. I want at least one biological child. A hysterectomy just isn't an option I want. :'(

The new birth control pills have a warning for anyone who has gall bladder issues, seizures/epilepsy and who have severe migraines. I unfortunately have those 3 issues. So now I'm worried. I'm thinking I will start the last pack of old bc. Call dr on Monday. Discuss my concerns then instead of taking a break, begin my new pill if its ok too.
Posted 8/11/2013 11:11 AM (GMT 0)
PD,

On the iPad right now so will keep this brief...
But definitely at your age and your desires for a
child... Get a 2nd opinion re the hysterectomy.

Take care....Tina
Posted 8/12/2013 12:07 AM (GMT 0)
Has the doctor ever said anything about you have so many ovarian cysts? If you have had multiple ovarian cysts, PCOS is a possibility. And it makes it harder to bear children. Have you had ultrasounds of your ovaries and, if so, does the report mention anything about PCOS?


Forgot to add: I'm usually on the fibromyalgia forum, but I've been reading the CP forum for a while to see if there are any others out there with interstitial cystitis.
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