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Update (Back From The Hospital) .. And Some Questions

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Hey Guys. So I have a couple questions but also wanted to give you guys an update on things. So I am out of the hospital I got out the 28th of May but haven't had a chance to get on in a while... hope everyone is well :) So I was in the hospital for about 2week after the first week i got transferred to duke childrens to get better care and to be under the supervision of my cardiologist. Anyways things are slowely getting better but it's gona take a little while before I can get my stomach issues taken care of. I am waiting to get into nationwide childrens hospital in ohio but oviously as you guys know the top hospitals that specialize in the care we need, take a long time to get into. But I just wanted to let you guys know whats been going on and such before I ask my questions :P

Ok so one thing is whe I was admitted into the hospital the pediatrican taking care of me told me she wanted me to be put on birth control to help the pain I have with my periods and the heavy bleeding. So with that said I have a appt with my pediatrician on monday to discuss with her about getting put on in. My question is with my conditon POTS is there a greater risk with me being put on it? Will I have to be monitored on it more?

Also I was wondering so I have chest port and a little earlier this evening me and my sis were playing around and her arm elbowed me right where my chest port its. When it happened it sent me in a lot of pain and it felt like my chest port got moved. Can you injure your chest port? If so , what could happen? I am not really worried about it due to me going to my pediatrican anyway on monday (so if there was something wrong she could tell me) , I am just more curious then anything.

Sorry this got long. Hope all is well.


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Hi Kayla

Im glad you are feeling positive about getting better, its important to say the least.

Just to let you know how i went on the pill when i was 18, i had a really very serious reaction to Dianette and it was so scary in fact i was never prepared to try any others. I think the Drs said i was allergic to the Estrogen in it, i forget now what exactly the reason was.

But thats just how i went, i dont take well to any meds it would seem!!

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Glad you are at home! I too have/had extremely painful, heavy periods. I had to be put on birth control pills at 15 to control the pain. I was fine on regular BC pills for a while, but, then started to experience nausea with them (tried several brands). I had to switch to Depo Provera shots. A couple of years ago, my GYN wanted my to see if I did ok on Nuvaring so I could have a little estrogen in my BC (worried about osteoporosis in my late-30's body and Depo Provera has no estrogen). I noticed my POTS symptoms were worse for about 1 1/2 wks each month even though my prescription was written so I used this med in a way to prevent having a period. So, my doc switched me back to Depo and that monthly down-turn has stopped. If you do a search of this forum, you should find several threads where several of us have talked about having sensitivity to estrogen. You are young, so I wouldn't assume you are going to have this, but, I mention it so you are aware that it might be a POTSie thing (I don't think there is any science, but, a lot of us here seem to have it) and also so you are aware that if you try one pill/method and you have some side effects, don't give up...there are lots of options.

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So glad to hear you are home. My daughter had to go on birth control when she was about your age because she was having such painful periods and she would get so sick with her period that she would end up in the ER. The birth control pills have helped her sooo much!

I hope you are feeling better soon.

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I've been on many forms of Estrogen over the years. I wouldn't have survived menopause with POTS without it. I think the nuvo ring is a good choice. It is low dose with the least side effects, but effective. I think it helped with POTS. I wouldn't worry about the port. It's just a sensitive area. Have your doctor check it when you have your appointment to make sure there is blood return, if you are still concerned about it. Glad you are doing better :)

Edited by corina
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Glad you're out of the hospital!! Let us know how your appointment goes!

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Kayla, I am so glad you are home. I've been thinking about you a lot and praying for good things for you.

I was on birth control for about six years. The pill gave me terrible migraines, and it was while I was on it the first and only time, that I had a bout of fibromyalgia that was severe. Coincidence? I don't know. I know I felt a lot better once I was off it.

I know nothing about your port. I'm sorry.

You take care and I hope you get into that special hospital soon. In the meantime, know we're all here if there's any other questions we can help you with.



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Glad you are home and recovering.

Have your hormones been tested?? On day 3 of your menstrual cycle.... Estrogen, LH, FSH, Progesterone??

If not I would ask them to check especially your Estrogen.

It may all just be coincidence but it seems like so many of us here have/had horrible periods. Then some horrible reactions to Estrogen as well.

Mine were horrible, pass out type pain even on high dose advil. They were never regular, some light, some heavy, I skipped a whole year when I was 16 for no reason anyone could figure.

They tried me on BC when i was 17 and it made things worse. So they tried me on Prozac for PMDD, didn't help either and after a year it made me a zombie so they took me off it.

I dealt with it until last year, my cycles kept getting worse as my POTS and other health issues got worse.

So they started testing my hormones only to find that my Estrogen was always way under even menopausal levels.

My Cardio and an OBGYN surgeon decided to do a complete hysterectomy last year thinking it might level out my POTS symptoms, since I was always way worse around my cycle.

This was a big decision and kind of last resort, so I'm not advocating for the extreme, it was just the right decision for me.

My surgeon was shocked to find my ovaries all shriveled up and I had cysts in my tubes, cysts in my ovaries, and a couple of small fibroids.

They diagnosed premature ovarian failure. THey immediately started Vivelle.

They wanted me to get my estrogen up to around 40-50 which is a good menopause level and get some of my bone back as I already have osteopenia.

I did NOT have good reactions to the vivelle patch and it's supposed to be the most easily absorbed and tolerated.

After 5 months even on a double patch they could only get my level of Estrogen up to 26 and it should have been over 100 for what I was on patch wise.

A really good Bio Pharmacist had them check my SHBG which was very high and said I just don't absorb Estrogen for whatever reason..... very long explanation.

I was told to try Nuvaring because it's so mild but it just wasn't worth it to me.

I think my body had been used to low levels of Estrogen for so long that it didn't know what to do with more.

I've been off now since November and I feel better than I did on the Estrogen. Not in any other way, in fact my POTS and everything else has gotten worse. But on the Estrogen I had rashes and itched constantly, horrible migraines, and was moody moody moody, I also had bad acne which I have never had a problem with even as a teen.

So maybe I was allergic, or my Mast Cells hated it, I don't know.

Even though my health overall is 10 times worse I don't think it really has anything to do with the surgery or hormones. I think all of my problems are just getting worse.

The one thing that is better is at least now I always feel equal in how bad I feel instead of having 2 weeks a month where I may as well be dead. The swings from my cycle were just terrible.

So I think you might benefit from the BC just be aware that there are A LOT of different ones to try and everyone reacts to each differently....which is why there are so many kinds.

My only advice is to ask for your hormone levels to be checked first.

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I'm so glad you're out of the hospital and feeling better!

I've been on BC since I was 17 - it was a combination of acne and bad cramps that convinced me. I've been on three or four brands, I think. Ocella, the generic form of yasmin, is what I'm currently on and I haven't had any problems. It's definitely helped with both the cramps and the zits.

Side note - BC also correlates to a 50% decrease in ovarian cancer risk after 5 years of continuous use (and, possibly, a slightly increased risk of breast cancer, mostly seen with triphasic bc - but breast cancer's cure rate is 93% and, given ovarian cancer's very poor prognosis, I'd much rather take my chances with breast)

It's just good to be aware. :)

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I've been on OCP (oral contraceptive pills, yet another acronym) for about the last 8 years. I had to switch from normal pills (35mcg estrogen) to micro pills (20mcg estrogen) - I get morning sickness otherwise (we know it's morning sickness rather than a GI side effect because I got it on Premarin as well). No obvious link to dysautonomia issues for me, but definitely try multiple options if one thing isn't working out for you. One other thing to consider talking with your doc about is the Mirena IUD - low-dose progesterone, doesn't need to be taken orally or put in monthly (it sits in your uterus for several years). I can't use it due to vaginismus, but other folks outside our community are big fans.

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Hey Kayla, kept you in my prayers while your were in the hospital.

You said you bleed a lot with your periods. Did your doctors do a through evaluation for anemia? Heavy bleeding can cause anemia and it doesn't alway show on a cbc. I had it and it didn't show until I got really bad. Some forms of anemia can be hidden too. I think a hematologist is the doc to see for that. Anemia can cause a high heart rate too! If they stop the bleeding with the depo shot, maybe you will start to improve after a few months. It can take anemia a while to correct and sometimes iron infusions are needed. That was what I had to do.

I also was always more symptomatic before my period. My pots is autoimmune and since being on IVIG my pms has gone away.

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