Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

Birth Control - Estrogen.......finally seeing the gynaecologist.


  • Please log in to reply
13 replies to this topic

#1 amberjolie

amberjolie

    Silver Member

  • Members
  • PipPipPipPip
  • 197 posts
  • Location:Ontario, Canada

Posted 03 September 2011 - 09:45 AM

I'm currently taking birth control pills with estrogen, and my doctor referred me to a gynaecologist because of some wacky menstruation issues I've been having (even on the pill!). Anyways, he said that because of my connective tissue issues, that I shouldn't be taking the estrogen-based pill.

The only problem is that there aren't too many other options for me. For personal reasons I don't like the progesterone-only pill, or implants. And I'm worried about barrier methods because they aren't as effective. I could look into tubal ligation (I'm finished with my family), but that would take a while to even see the gynaecologist and then set a date.

Anyone else have issues with estrogen-based birth control? I'm assuming it's due to the vascular issues.

#2 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 03 September 2011 - 11:05 AM

Hi Amberjolie,

I've included a link regarding the complex role of oestrogens in inflammation which I hope you'll find helpful and informative.

Although I was taking the birth control pill since before the year dot and suffered very few problems with it, I really didn't develop Scleroderma until after I'd been through the menopause and I had been on the progesterone only pill for about ten years before that (it's quite difficult to remember exactly!! ;) )

I'm afraid, therefore, that I can't actually advise you from my own experience, but I'm hoping that we may have other members who will be able to give you more first hand information.

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#3 jillatk

jillatk

    Senior Bronze Member

  • Members
  • PipPipPip
  • 78 posts
  • Location:Colorado

Posted 04 September 2011 - 11:34 AM

Amberjolie,
My doctor took me off the pill (estrogen based) immediately after diagnosis due to concerns about increased risk for blood clots. My rheumatologist did several tests to check for risk for clotting. Even though I did not have any of the markers, he still did not want me to take it. He did not want me to be on a progestrogen either. My obstetrician/gynecologist agreed that the risk was too high. Luckily all the changes shot me right through menopause with very few symptoms.
I am not surprised that your doctors are discouraging you from birth control. I hope you can find a workable solution.
Jill

#4 amberjolie

amberjolie

    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 197 posts
  • Location:Ontario, Canada

Posted 04 September 2011 - 04:51 PM

I'm actually kind of hoping that my menstruation issues are some premature menopause or something (I'm only 36, so not near normal menopause age and my mom was the normal age when she went through it), although women going through perimenopause will regulate if they go on birth control pills, and they're supposed to mask menopause.

But I have some months where I start bleeding one or two weeks before I should be, which lasts a week or two, and then I still bleed a little when I'm on the placebo pills, and then other months where I don't bleed at all.

Really odd - especially since I used to be very regular, whether on the pill or not.

It may take me a year to get into a gynecologist (since I'm holding out for a female), and then who knows how long for a tubal if I went that route. But until then, I'm thinking I should stay on the pill. Otherwise, I'd be using a method that had a higher risk of pregnancy - and that would really not be good for my health, physical or mental!

I have an appointment with my rheumatologist in a couple of days so I'll ask him what he thinks.

#5 Sheryl

Sheryl

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,029 posts
  • Location:Brooklyn, Michigan

Posted 04 September 2011 - 05:01 PM

amberjolie, maybe all you need is something simple like a D&C. That might rectify the problem. Maybe your Rheumatologist can get you into someone quicker. Maybe she knows of a female specialist that would see you sooner. Good luck.
Strength and Warmth,
Sheryl

Sheryl Doom
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)

#6 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 06 September 2011 - 12:16 PM

Hi Amberjolie,

Just out of curiosity (and not to be difficult or worrisome) would you hold out for a year for a female gynecologist if there was any chance your irregularity was caused by cancer, or would that (understandable and reasonable) preference for a female doctor fade quickly into the distance?

I'm considering that it's probably one thing to try to get established with a female doctor on a permanent basis for regular care, but yet another to postpone (for so very long) dealing with a regular medical issue that needs immediate attention.

If it were me (and I'm not saying you should do the same, just explaining what I would do if I was stuck in a similar circumstance) -- I'd try to see the first good gynecologist who would take me and get the problem solved, one way or another.

Meanwhile, I'd also leave myself on a list to get in to see the doctor of my choice, for long term care. But I wouldn't put off dealing with the current issue for any reason, because there are enough complications to deal with just with the scleroderma, not to mention anything else on top of it.

Also, I've had some female doctors who were absolutely splendid (and one who I rate as my best doctor, ever, hands down) but I saw one who was absolutely the worst doctor I've ever seen, period. So although I have a general preference for female doctors in all specialties, I found out the hard way that is only the tip of the iceberg in evaluating them, and if forced to choose, I would pick a male with a good attitude and experience over a female with a poor attitude, no matter what their level of experience is, and no matter how up-close-and-personal the exam or treatment.

Wouldn't you feel abashed if you waited a whole year, suffering more and probably worsening symptoms, only to be stuck with a horrible (but appropriately-gendered) doctor?

That's just an angle to think about. I hope that things turn out okay no matter what you end up doing. And I'm sending lots of warm hugs your way while you continue to work this out.

:emoticons-group-hug::emoticons-group-hug:
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#7 amberjolie

amberjolie

    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 197 posts
  • Location:Ontario, Canada

Posted 06 September 2011 - 04:27 PM

Hi Shelley,

To be honest, I never really considered that it could be anything serious. I just figured it was some really odd menstruation. So I figured I could wait. The rheumatologist still doesn't think any of my symptoms are specifically indicative of scleroderma, so I guess that's not a diagnosis, just the Sjogren's. But what else could cause my mouth to get these "membranes" like the one you get under your tongue, at the back where the top and bottom jaw meet, and just inside my lips?

Sheryl,

I am feeling so low after seeing my rheumatologist. Essentially he feels that because I always bring up 3 or 4 new issues each time I see him, that I "ruminate" too much about my health, and that maybe I should look into an anti-depressant (which he will bring up with my family doctor). I didn't realize pointing out new things I've found in case they are related to the autoimmune thing was ruminating. I'm so annoyed that I'm about ready to drop specialists in totality (except the gynacologist when I get her, because I really want to see her).

#8 judyt

judyt

    Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPip
  • 640 posts
  • Location:Auckland, New Zealand

Posted 06 September 2011 - 05:01 PM

Hi Amberjolie,

Talking about doctors and your own personality, I sympathise with you. When my children were little, and I had undiagnosed scleroderma, I found myself being told that the problems my baby boy was having (he turned out to be lactose intolerant!!) were all to do with Me!! According to him I was over-anxious and protective and was sent home with a prescription for anti-depressant (the drug of the moment in the 1970's). My response was to never see that man again - I fortunately was able to see another doctor in the same practice the next week who told me it was patently obvious what was troubling the baby. Unfortunately he didn't know enough in those days to recognise my Raynaud's, telangectasia and bowel problems for what they were but I stayed with him until he retired because I felt he would at least listen and do his best to help.

Don't stick around with somebody who doesn't understand your efforts to take care of yourself and to understand your disease. My current general practitioner makes a note of everything I tell her because as she says, one day it might turn out to be significant.

Best of luck and lots of warm hugs.

Judy T

#9 marsha

marsha

    Silver Member

  • Members
  • PipPipPipPip
  • 157 posts
  • Location:Maine

Posted 07 September 2011 - 06:15 AM

Amberjolie,

I can totally sympathize with you. For the last 4 years on and off I have also been struggling with the same issues, I was put on a low dose pill. It didn't help my situation at all and I ended up with dangerously high blood pressure! So I came off it and had test after test after test. Finally they found a small polyp and I had a D&C and with much trepidation I had the Mirena placed. I had it placed kicking and screaming didn't think it would work, I had been bleeding for 6 months straight (I was exhausted!). After 6 weeks I did notice a bit of a break, I went to the doctor and was scheduled to have it out, but she urged me to keep it in.

Very long story short.. I did keep it in and now at 8 months I am doing great! Actually I haven't had a period in 3 months. :))

My gynecologist's thoughts are this: Hopefully by the time the Mirena is ready to be removed in 5 years, I will have been or be about ready to go through menopause.. I am almost 46. There are some hormones in the Mirena and they are supposed to stay in the uterus. I keep questioning doctors. It just seems that not one of my doctors even knows what in the world scleroderma is. The first year of my diagnosis they just looked at me. I would ask questions and they would say, "I don't know!" Ugh!

Hope you find the answers you need, and I hope my story helped a bit.
:)
Marsha

#10 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,276 posts
  • Location:Minnesota

Posted 07 September 2011 - 06:42 AM

Hi Amberjolie,

Yes, as I understand it, there are a great many possible causes of menstruation problems, including hormone or ovarian problems, infections, fibroids or polyps, endometriosis, and uterine, ovarian or cervical cancer. Some things can be easily remedied or just lived with, but the symptom itself requires prompt evaluation.

Therefore, you should be seen reasonably soon and get regular care by an experienced board-certified gynecologist until the matter is entirely cleared up.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#11 Jalee85

Jalee85

    Senior Bronze Member

  • Members
  • PipPipPip
  • 30 posts
  • Location:Mandan, North Dakota

Posted 07 September 2011 - 05:56 PM

I was on the NuvaRing which is a really low dose estrogen birth control, but I have tested positive for APS antibodies so I have gone off of that which I was on for 5 years. I am 26 years old and want to have a child yet. I am getting married in a year from now. So I was told that I should not do anything but just barrier control as you so nicely put it. :lol:

Jalee

#12 amberjolie

amberjolie

    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 197 posts
  • Location:Ontario, Canada

Posted 20 January 2012 - 09:37 PM

A few months ago I wrote that I had been having very strange menstrual cycles. This has been going on for over a year now, perhaps even two. I had an appointment in October with a gynaecologist, but I didn't realize how long the wait would be, since I had to get an ultrasound first, and I had to leave before seeing the doctor.

So my makeup appointment is this coming Monday. I really hope she can sort out why my body is doing such strange things, and all on birth control pills, which are supposed to regulate the cycle. I'm on the highest level of estrogen possible too.

Actually, back in September she told my family doctor that I shouldn't be on birth control pills with autoimmune disease. Is it because of the circulation problems (which I do have)? I didn't stop yet because there aren't too many other options for me, for various reasons, and I definitely wouldn't want to deal with a pregnancy. I've finished with my family, and don't think I could handle a pregnancy or a baby in my condition, even if I wanted to.

So I'll see what she says, but I'm happy to be able to see her now.

#13 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 21 January 2012 - 01:52 AM

Hi Amberjolie,

Here's an article on the birth control pill which unfortunately doesn't mention about autoimmune diseases but has lots of helpful info.

That's good news that you've got your appointment to see a gynaecologist on Monday; I do hope she'll be able to help and advise you.

Kind regards,

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#14 amberjolie

amberjolie

    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 197 posts
  • Location:Ontario, Canada

Posted 23 January 2012 - 05:17 PM

Well, the gynaecologist didn't really have anything to tell me. She gave me a different prescription for birth control pills, saying that those kind seem to be good for not spotting between periods. Although then it came up that I get migraine auras, and she was a bit concerned, saying that people who get migraines and auras shouldn't be on birth control pills because it slightly increases their chance of a stroke.

So really the only other option would be a tubal ligation, which I'm somewhat considering.

Then she wanted to send me to a neurologist about the auras (like I need another doctor's appointment!), and set up another appointment in 3 months. But that appointment also has an ultrasound so would be 2 hours long. And getting to and from the doctor takes an hour. I just can't do it. I work, and they expect you to make up the time you miss at doctors. And I have enough appointments as it is.