Last post Sun, Aug 17 2008 9:31 PM by Jac. 15 replies.
I'm a 23 year old female with a rare type of CMT. I'm unable to walk so I use a wheelchair all the time. I need to go on birth control to regulate my cycle because I have headaches caused by hormone levels. My general doctor recommended the patch. My gynecologist won't put me on birth control because of the increased chance of blood clots since I'm wheelchair bound. Does anybody have any other ideas? I need to get my headaches figured out but I also need to find a contraceptive that will work for me. I don't think I could use anything internal like an IUD because of the position of my cervix due to scoliosis (insertion being the problem). My gynecologist is not incredibly helpful because she doesn't really treat me like her other patients (but she is a lot better than my previous gynecologist).
Please help! Thank you.
[[Edited by me - Mods deleted the message I was replying to, which was a VERY suspicious-sounding scam-esque message from a doctor in Ghana. But my warning still stands - PLEASE be very careful about anyone who replies to you in an email or forum message saying they can promise you incredible results for your problem. It's very easy to be taken in by scam artists if you're not careful!!]]
BEWARE of any messages promising miracle cures.
Especially when they claim to be a doctor and yet write nearly illegibly. AND they've been a member for less than a day and have posted no personal info about themselves in their profile.
OMG! THERE'S ALWAYS A BAD APPLE TO SPOIL THE BUNCH! CALL A FRIEND A RELATIVE OR ASK UR DR. FOR A REFERRAL TO ANOTHER DR.PLEASE DON'T RESPOND TO SOMEONE U DON'T KNOW. ADVICE IS 1 THING ,BUT TO SAY UR A DR. & U CAN FIX SOMEONE IS TOTAL BS! WITH ALL MY HEART,GOOD LUCK,TOOTSIE
Oh I know. There are scammers everywhere unfortunately.
I am acutally a doctor (pediatrician) as well as a person with a disabilty myself, but it is unethical to give medical advice over the internet.
However I can give medical information, although I don't know if it will solve either your cycle problem or your contraception problem.
Forms of birth control that regulare cycles are all hormonal. There are two main kinds - combined and progesterone-only. The combined estrogen/progesterone are the pill, the patch and the ring, and they all have that risk of blood clots which is higher in women who are not very mobile. Some gynecologists will prescribe combined HBC to women who use wheelchairs but who don't have other high risk factors for blood clots (like smoking or family history.) Pregnancy itself can also cause blood clots so it is a risk-benefit situation. The patch has higher hormone levels than most pills currently in use.
Progesterone-only includes progesterone-only pills and the the Depo-provera shot once every 3 months. I believe there is also a new 5 year implant that is progesterone-based. Many women on progesterone-only methods stop having cycles entirely after a couple of months.
An IUD may or may not help with the cycle problem (the Mirena might because it contains a small amount of hormones) but it sounds like those are not options.
Other forms of contraception that do not involve hormones at all are the male and female condoms, and the diaphragm, with spermacide.
This is all information your gynecologist should know much more about than I do and be willing to work with you on as much as possible. There doesn't seem to be one obvious answer so you and she are going to need to have some discussions and try to work out something that is safe and will work for you.
I'm not a doctor and don't know if this will help. I went on Deprovera shots before I had to have surgery for my new Achilles. This is birthcontrol but it stops my period which was why I went on it. The shot is once every 3 months usually given in my tush or arm. I had no side effects but I may just be lucky since it is rare for me to have any real side effects to meds.
Have you looked on WebMD to see what all they talk about under birth control?
Shelly
I'm not a doctor, but I do play one after a couple of pints.
You could try the old tried and true method of not having sex...
Ha! But what fun would that be? Seriously, I got nothing here...
OK TriDog...I guess we'll try to give you a pass on that and not blame your gender as much as your failure to read her post! Birth control is sought for many more reasons than just to prevent pregnancy....that's actually an example of the judgemental attitude that women with disabilities often feel FROM their doctors and it prevents us from getting equal care. It's one of my top pet peves and I feel like a huge barrier to us ever achieving reproductive justice...ok but that's another rant!
I can actually personally relate to your search because I have these headaches too and my doctor thinks they're related to hormonal shifts so we've tried several different types of the pill....They are called different brand names but the ones that don't completely stop during the week of your period are supposed to help with headaches because your body doesn't have such an abrupt drop off in the hormones...I'd give you the "one" that worked for me perfectly but we haven't found it yet! I can relate to your frustration though (both with close-minded doctors) and these headaches! Mine are dull but last for DAYS...I go to bed with them and wake up and they are still there. I still go to work, write, etc. but they are distracting for sure. Good luck and I'm glad you posted this! I haven't heard from anyone else with these and working in the psych field-I always wonder if it's "in my head"--LOL!
Depo shots will work. A diaphragm will work also. No medication side effects with this either. I used one for years. There are many different sizes too. Your doctor can fit one for you. Sounds like you need to find another doctor. Good luck!
Becky
Thanks everyone! I'm definitely going to look into Depo shots but I'd prefer something that didn't completely stop my periods. My gynecologist has referred me to a neurologist hoping he/she can figure out my headaches. The problem is not neurological so I kind of feel like I'm being passed off. I guess I'll follow through with that and then, when that route produces no results, go back to gynecologist. My problem is that I don't have a regular doctor. My pulmonary doctor handles my general stuff and he is pretty good. He just doesn't have the time to do it and I feel like a general doctor would be better for me. If only I could find one!
It is very frustrating being disabled in terms of accessing health care. I've been fortunate to have had some great doctors (past and present) but not all of the medical world treats me like a typical woman. I find it particularly amusing (and frustrating) when they are shocked to discover that I have my master's degree. Most never expect that! Then some still don't believe that I understand my body, needs, etc.
KaraSwims: OK TriDog...I guess we'll try to give you a pass on that and not blame your gender as much as your failure to read her post! Birth control is sought for many more reasons than just to prevent pregnancy....
Hey, I was going for a joke. OK. a lame attempt. Sorry. they can't all be gems.
But let me get a couple of pints and I'll get my white doctors coats and we'll see what happens next..
You know what girl... you need a diff doc thats crap all the way. I use the shot. Depo provera. my doc isnt wanting to change it, I am also w/c bound for 15 years & i used it inbetween both my daughters births. Hope this helps.
I had my tube tired for medical reasons , i adopted two wonderful daughers from India and i am so blessed ... i could not love them more if i gave birth to them myself ! rainey xo
JS, if you happen to see this, I'd like to put in my two cents. Definitely, the IUD would not help you as far as hormonal and cycle regulation as the Mirena only has enough hormone on it to thin out the lining of your uterus. If you're talking about using it for not getting pregnant, its great but not for the reason you've been talking about. If anything, the IUD gives you less periods in some cases, or in mine, makes them very very very light.
Have you looked into Norplant? My OBGYN was telling me about a new version of this where it is only one stick instead of three. But they are birth control inserted under your skin on the underside of your upper arm. Its supposed to release the hormone at consistant levels and only has to come out every 3 years or something like that. Might be a great option for you, but not completely pain-free insertion wise.
I'm sort of leaning towards what a few others have been saying about finding a new doctor. Its fine if the OBGYN is not experienced in treating women with disabilities but its the attitude that makes all the diffrence. You should be treated no differently than any other patient. I've always found success with doctors who are listed specifically with my insurance as Board Certified. They've completed more education that other doctors, and I always have a rule about OBGYNs. They need to be at least 15 years older than me. LOL Partly cause I'd feel weird going to a guy my age and also because I know he's had lots of experience in just general OBGYN practices that he'd find me a challenge.
Hi, I certainly understand and can identify with your situation. I have limb girdle MD and though I am not wheelchair bound have had many years of issues with migraines related to hormone levels. In 1996, I was diagnosed with polycystic ovary syndrome, and without going into all the details about this condition, it somewhat predisposed me to hormone level related headaches. Part of my treatment then and even now is to take a birth control pill to regulate my cycle, make my periods less painful and such.
It took me a while though to figure out what was going on with my headaches. They were always the week of my period, the week of the inert birth control pill. My first gyno that diagnosed my PCOS was so understanding, and he explained that it was a abrupt shift in hormone level causing the headaches. In addition to my regular pill at the time (Desogen 28), he prescribed a hormone patch for me to wear the week of my period. It was called FemPatch and was more for those going through menopause. But, it workly like a miracle for me! I had to do a little experimenting with it so that I still would have a period that week, so I believe I only wore it for 3 or 4 days, just enough to give me a boost of hormones. This treatment was my solution for about a year and a half. Then, it gradually became less effective, and I had a migraine about every other period. He took me off of the FemPatch entirely, and I went for about 3 years where suddenly the headaches stopped, and my ovarian condition and its other symptoms were under control.
I wound up moving and had to switch to a very insensitive jerk of a gyno who didn't understand these headaches at all. He would not put me on a patch or anything for the headaches. He tried to suggest they were related to my MD even though the pattern was clearly linked to my cycle. I was miserable and eventually had such dibilitating migraines that I missed at least one day of work every month and lost weight due to the migraines getting so bad I would vomit and stay nauseated for days. I literally became malnurished.
That was my breaking point, and I found a doctor that specialized in PCOS treatment and hormone problems. He put me on a similar patch for the week of my period and like the previous time, I took Desogen and the method was a solution to my migraines for about a year. Then I was back to having them every couple of months. He was out of solutions for me and basically made me out to be a medical mess and left me to feel that I was making it all up. I switched to my first female gyno in that same practice, and she's been wonderful. She let me try different birth control pills, different patches, and we made sure that most of the time, I had an effective solution to my migraines. Two years ago, she introduced me to another option once the others were no longer working. I have been on Loestrin 24 now and only have 2 or 3 months out of the year where I have a migraine, and they are mild enough to respond well to Midol. Something about Loestrin 24 helps, because the week of your period, you still take 3 days of active pills. It gives you less time without the hormone in your system, and you have less time for your period making it generally less of a pain.
Consider trying Midol or Pamprin too, if you have not. I have had mixed success with Midol over the years, even using it while doing the hormone patch thing the week of my period. One caution I will give you is for those pills that have you only having four periods a year. I tried those and even experimented with having a few more than that, but that became a nightmare. My body got so used to so many days of taking the pill without a break that I got false pregnancy symptoms where I literally had a morning sickness type thing. And, worst of all, I started losing my hair---lots of it. Your experience with that type of dosage might be different, but just a word of caution about it...
In closing, know that you should not give up. Be willing to try as many things as you can until you get a solution that works best for you, and your doctor should be willing to do this for you. I found with my current doctor, because she is a female, she is more sympathetic to the period woes. Her attitude is worlds better than any male gyno I've gone to. Good luck. I am certain you will find a solution to get rid of your headaches! It just may take a little work and patience on your part.
