Sorry long post - hope those that know me can add some insight for me.

I've been unstable for around 2 months now. Not depressed, not hypomanic or manic but very unstable. I feel like the meds no longer work at all, and I am having trouble taking 2 of them as I should. I take the AP and AD properly but the stimulant and benzo get left out some days as I do not feel they help.

I have been having a whole lot of pain issues. I have pain in my uterus from the mirena. Doctors say the pain is not there. But almost every day for 18 months I have had pain from it. I also get terrible lower back pain, so pdoc has suggested it is referred pain. Some days I am screaming in pain as I also have issue with taking painkillers. One time I showed my partner how much physical pain I was in, and he ran screaming from the house. Literally. He could not handle seeing just how much I hurt.

I have had aching leg pain since I started this AD about 16 months ago. I have cysts in my legs from cutting and due to falling issues I spend more time sitting down in the fetal position. I know sitting is bad but I do also walk over rough terrain around 3 hours a day for work alone. I've tried more movement and exercise and that has usually had me bed bound for a few days. Resting/less activity = much less pain.

When I go inpatient they just put me straight on codeine and ibuprofen every 4 hours for the pain. At home I will take 1/4 of the dose I am on per day, in hospital, about once a month, if that at home. I dont feel I deserve to be painfree if I am not a productive member of society and life.

My gyno says the pain is not there at all. My tdoc says possibly referred pain but has no ideas to help me. My pdoc believes the pain in my legs and has suggested med change but we're on the last of the OCD meds now and its worked so well for most of the distressing OCD.

What do I do? I dont want to spend the money on physio for pain that may all be in my head. How do I know its real? How do I prove that I feel it regardless?

[Ripose]

Can you go to a pain management specialist?

Everybody deserves to be pain free, regardless of their position in life. Nobody including yourself should have to suffer.

There are many meds that can reduce or eliminate pain, not just painkillers. For me Cymbalta worked very well for unexplained pain.

I'd need to first get a referral, which means another GP or pdoc visit, then the initial visit will be far more money than I have at the moment (I can not afford to feed or clothe myself at the moment) so I feel stuck.

SNRI's tend to make me manic - but its been so long I dont know if that is an issue anymore.

The other option is go to the hospital and get free care. But I do not want to take up resources or time if they 1. dont believe me 2. do not find anything.

[Edgar's Mom]

If you need help Supanova I hope you'll go get it and not worry about taking up resources. You deserve care just as much as anyone else. You deserve to be pain free and I hope you are able to get some relief soon :-(

It p*sses me off when they brush things off just because they can't find them. If you are in pain, then you ARE in pain. Regardless of the cause, the pain is real.

(((((HUG))))))

The most annoying thing about MI is that if you have a health problem, they think it's in your head. It takes persistence to get people to see you as someone other than a collection of acronyms from the DSM. Read this https://en.m.wikipedia.org/wiki/Nerve_conduction_study
And see if you can have the test.
But don't stop fighting for pain relief. It's YOUR body and you have the right to be free from pain and not just dismissed as a fuss body.

[raspberrytorte]

I don't know what to say... but I hope you feel better soon. As others have stated, no one should have to be in pain all the time. Have you thought about getting the mirena removed? That would help with that pain at least.

[cashart10]

Your gyno is saying that b/c of your mi. If you didn't have it, your experience would most likely be different. It's terrible. I think you should go to the hospital and get the help you need. That kind of pain is not in your head. You need and you absolutely DESERVE help. You are a productive member of socitey. You are WORKING despite your severe pain and despite your crippling depressions. You have a partener and friends who love you and want you to feel better. Take care of you!

[Curiosity77]

Have you tried gabapentin for referred pain? It's also good for anxiety, and is a weak mood stabilizer. Doesn't work for everyone, but maybe worth a shot? Also, maybe consider alternate contraception if the mirena is hurting? Sucks when doctors don't listen about pain.

[BeyondtheRainbow]

How long have you had the Mirena? I know it is very low hormones, shouldn't be enough to do anything but nothing has ever de-stabilized me like that thing did. I had it in 9 long, suicidal months and finally we decided to remove it to see what happened. 3 days later I was better. Not all better but better.

My pdoc and gyn were both shocked and discussed it (they work at the same hospital) and both immediately found another case of bipolar and Mirena not playing well. So now they are much more cautious with using it with bipolar patients there.

If it's newer or correlates with the instability at all you may want to think about removing it to see if you improve.

[~Christina]

As you know I have Fibro.. It's really hard to get pain addressed when there is a mental illness also, Lots of Doctors like the blame one for the other.. Vicious circle for sure..

Solution? Well try to realize that YOU deserve help, If your not taking your medications correctly then it's really a form of self harm.. Self harm comes for feeling unworthy, poor self worth and esteem, it's something that I struggle with.

Don't settle

[Edgar's Mom]

My Gyno wanted to install a Mirena, and I told her I was bipolar and had concerns because I always reacted strongly to birth control pills and got really b*tchy. They insisted it was safe and that nothing would happen. A week later I was in her office demanding that she take it out that instant. My mood went crazy. I was all over the place I couldn't control my anger, I was smashing things and breaking them, as well as yelling at people. I was actually headed into crisis and my husband went with me to convince her how bad it was.

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The mirena has been a "sore" point. I got it because I cannot have any other form of hormonal contraception and I was going batshit insane 9 days of the month due to hormonal changes. I did go inpatient for around 3 months all up over the initial 9 months of having it. I still don't feel ok but it is better than going ridiculously suicidal for 9 days a month every month on top of bipolar which was triggered by all this again after 4 years stable.

We tried everything I had access to from the simplicity of diet and vitamins to AP AD and benzo combinations. The best the doctors can offer me if I get the mirena out, is the safety of inpatient every month. So I feel stuck.

[BeyondtheRainbow]

Since it is causing pain have they done a scan to be sure it isn't embedded in the uterine wall? I know that was one of the risks they discussed before putting in mine. I think it is rare but it would explain why it hurts.

Hormones are just a disaster for us. I am so glad to be nearly done with menopause and that for whatever reason it started early for me. The mirena solution to the issues from early menopause was rough for the 9 months it was in but when it came out it took one month to know I needed a hysterectomy and while I kept my ovaries so have had natural menopause they cut the blood flow to them so it was faster. My hysterectomy was 3 years ago and I'm down to just one hot flash every few months and very few other hormonal issues. But before that it was bad. I tried being on the pill for a year to regulate my cycle and help me know when I was apt to be extra-moody, early on after diagnosis. That year was such a mess from the hormones and I had no idea that they were the problem because I was new to bipolar and not doing very well with it either.

I hope they get something worked out for you. I feel for your misery and know how hard it is to put up with something that only sort of works. (That was the mirena until we realized how very bad it was. But at least it didn't cause me physical pain, just made me want to die for 9 months and I had a lot of breakthrough bleeding instead of stopping my periods (but it was better than the periods that preceded it).

If you were in the US I'd say insist on a scan to check placement but I know it's not that easy for you. But maybe try to get that done? I saw the thing, it would hurt if it was stuck in muscle tissue.

[Wander]

Your pain is a very real, horrible, experience and you deserve to be as pain free as possible. I have Fibromyalgia and I know what it's like to have pdoc's assume your pain is psychosomatic and CBT and anti-depressants will fix it. It can be so frustrating trying to get the right help. Have you tried Tramadol? It really helps with the burning, aching, nerve-like pain I get all over my body. I take it sparingly as it is addictive. I really hope you find relief soon.

I have had a scan where they said it was upside down! I asked 2 gyno opinions and 2 pdocs, all said it would not be causing pain and still works. I have continually be told it is not causing the pain and I'm wasting my money to investigate it.

Since referred pain has been mentioned I feel I should go to the physio first, but that's anouther few months wait and see if it works. If I get another scan that's less of a wait and costs just as much. But I have to be referred so I need to pay out a gyno or gp appointment.

The other option is the public route. I already have a heavy psyc record so it is really hard to get them to believe me or have them not question my pdocs medication and treatment.

I think if I go to the hospital I can get seen but I hate taking care from someone who's issue is real.

[BeyondtheRainbow]

Pain is a real issue. Don't let them tell you that it is not. That's why (at least here) we count pain as a vital sign. Pain is not something that someone can tell you that you are or are not having. And gyn pain sometimes occurs for reasons that are not obvious.

When I started menopause I started having serious blood loss and pain so I went to a surgical gyn that I had seen before because she is excellent with PTSD. They had me get an ultrasound and I had a polyp that needed removed. But I kept having serious pain in my right ovary. The surgeon was sure that I had a cyst. We agreed to remove my right ovary. When she got in there she said she made everyone in the room look at the screen to see if they could find any signs of the cyst she was positive was there. Nobody found anything.

I kept having the pain for the next year. Every month I had the same pain and even when my hysterectomy was scheduled the dr didn't know if it would solve my pain. She said it was still real and was going to send me to a pain dr if it wasn't cured.

When they removed my fallopian tubes the right one had gotten so long and thin that eggs couldn't pass through without causing the severe pain. No pain since. That pain was totally undetectable and unpredictable. It was also very real and my surgeon was very glad to find a reason but she told me again that not finding it wouldn't mean it wasn't real.

Don't give up on yourself and don't discount yourself. Your pain is real and you deserve to have it treated. Period. (Pun not intended but not too bad .

So the pain has got so intense at times, it is triggering panic attacks. I had a doozy last night. I begged my partner to take me to hospital but he said I should ask on fb or wait until the weekend. That did not help cos I figured it mustn't be real if even my partner thinks it can wait for 3 more days of pain. I don't know. I am so upset. This HURTS and te docs won't do anything and no one will go to them and say HEY this pain is there.

[BeyondtheRainbow]

I think you have to be the one who says/insists the pain is there. I know it's really hard but you are the one in agony and you are the one who can describe it.

There are so many gyn things that can cause pain, from cysts (common), to mirena placement to the rare malformed tube that caused so much pain for me to so many other things. Even a change in how the hormones are affecting the thickness of the uterine lining can cause pain.

And I feel for you. Can you tell how much questioning of what was wrong with me I went through? I thought I had endometriosis (no), the cysts I didn't have, PCOS, a fibroid that was deeply embedded in the uterine wall rather than a polyp, the polyp was maybe so large it was causing friction, I don't know what else but I had so many things I thought it was because I thought if it wasn't one of them then I was making it up and I couldn't live with that. I was so sure that I really was making it up that I kept clinging to these random ideas hoping I was wrong and wasn't lying to myself and everyone. And finding the reason was the biggest relief.

There is a reason for your pain. They may be able to find it or not but just because they haven't doesn't mean it isn't there. There can even be cellular level changes that cause gyn pain. A pain management specialist may be in order and will have lots of ways to counter various types of pain.

Don't give up on yourself!!!!!!!!!!!!!! You matter!!!!

[Edgar's Mom]

If you feel like you need to go to the hospital I hope you will go! If you are in pain, you ARE in pain.

Thankyou to all of you.

I WAS in legitimate pain. I went crying to my pdoc and when she asked me to rate it her jaw dropped and she sent me to hospital. The hospital staff were so lovely and never once made me feel I was making a fuss over nothing (as every other doctor did).

They removed the mirena which hurt but on the first tug I knew it was what was causing my pain.

I have pain in my legs but it is so mild compared to the mirena pain.

I will never doubt my pain again. Thankyou for making me realise I am worth it.

I will have some pmdd issues now but the relief is so amazing, I don't even care right now.

[BeyondtheRainbow]

I am so glad that you told your pdoc and that she heard you. I am glad that thing is out of you. They are great devices unless they fail in which they are horrible. It shouldn't have hurt to come out so that's another sign it was the problem.

I hope you have someone who can work with you on the PMDD. If nothing else push for hysterectomy. My dr. told me she has no explanation for this but even when the ovaries are intact the hormone effects go away and you don't have "PMS" or any signs that you would have your period if you had a uterus. It's bizarre but true. I asked if she thought all the rest was in the head and she said absolutely not but that something changes and that it had for her as well (she'd apparently also had a young hysterectomy). The only sign I get ever of hormone fluctuations might be 1 day of slightly sore breasts and that can be from my AP.

You matter. Don't ever doubt it.

Thankyou. I am only now realising I don't deserve to live in pain.

It really hurt to get out and I am the type of person who rides horses with broken bones. I was so sad I was alone and no one was there to comfort me. Or help me as I missimformed the hospital about pain relief.

Today my mood is all over. Floods of relief. Some soreness then memories of the pain then sadness then back to happiness that the pinching is gone. And anxiety about the hormones again. I should do some research to see when they return to normal. My body feels so relaxed though.

[BeyondtheRainbow]

When mine came out it was weird, I felt the top of my cervix and then the bottom of my cervix and then it was out. No pain though, just had never felt the top of my cervix before. It sounds like yours may have gotten tangled in the muscle tissue.

My hormones were back quickly. I think mine came out in mid-June and my hysterectomy was scheduled after my first period in early-mid July. But I had fairly heavy periods every 2 weeks throughout the entire time I had the Mirena so I'm probably not a good example.

I had sit down with my family dr and tell him that I lie about pain and not to believe me without checking thoroughly after I passed kidney stones without pain control because I didn't tell him the truth about the pain of a test. He now double checks things. My dentist just flat said he doesn't trust me to judge pain because I had a tooth that was one day from septic that I said was "sore" and he said had to have been excrutiating. He put forth a theory I've wondered myself, that people on APs seem to feel less pain. (I used to see it with my patients). For me add in some PTSD and it took the 2 years of gyn pain to make me learn a lot about pain and handling it properly.

It is a valuable lesson.

[Sesiley]

I had the same issues with the Mirena. I now have a paragard, this isn't the best option for everyone. Weigh the pros and cons ok? Which direction or choice benefits the most. Make a pros and cons list. It helps. Get a second or even third opinion.

You do NOT deserve to be in this kind of pain at all!



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[Sesiley]

Originally Posted by BeyondtheRainbow

How long have you had the Mirena? I know it is very low hormones, shouldn't be enough to do anything but nothing has ever de-stabilized me like that thing did. I had it in 9 long, suicidal months and finally we decided to remove it to see what happened. 3 days later I was better. Not all better but better.

My pdoc and gyn were both shocked and discussed it (they work at the same hospital) and both immediately found another case of bipolar and Mirena not playing well. So now they are much more cautious with using it with bipolar patients there.

If it's newer or correlates with the instability at all you may want to think about removing it to see if you improve.

Yes. Bipolar patients do not mix well with hormones. I was on the Mirena and was severely depressed....

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