Females only-hormonal migraines and treatment for endometriosis

I have never been able to exactly pinpoint the exact trigger of my migraines. I get month long migraines and have been able to find things that do make already existent pain worse.

That being said, I have never had a normal menstrual cycle. I have gone 2 years between periods before. I now see a gynecologist who diagnosed me with polycystic ovarian syndrome.

Together we can somewhat regualte my cycle. Unfortunately now I have extremely heavy periods and excrutiating pain but not only during my period but all the time. I promise this does come back to migraines.

We at first thought the cysts on my ovaries were causing pain but no. My ovaries are twice the size they should be but she said that shouldn't cause any pain.

On my last visit she did an ultrasound and found 2 very large possibly fibroids in my uterus. Unfortunately where they are located is not where my pain is. She is thinking that it may be endometriosis causing the pain.

We discussed surgery and I declined pain pills at the time of that visit cause my stomach tends to revolt against me nowadays to everything including food and pain pills taken for even a couple days make my migraines worse.

Surgery could include some minor such as she do a d&c or take out the ovary right where the pain is or she said she could do a hysterectomy but she thought I was too young for that.

My doctor and I have never had the I need birth control or I want children one day discussion. It's not because she's bad doctor either. There's no need. I'm a virgin and I don't want kids. They may be more info than you all want to know but just wanted to cover the bases.

Well the pain has continued to increase and I have decided that I will suffer any side effects if I can just get a little relief. I called her back yesterday to get some and she mentioned a shot she could give called lupron.

This is where the migraines come back. She asked me if my migraines were hormone related. I told her I was never able to find an exact trigger. The reason she asked is that this medicine can and most likely will cause an increase in migraines.

So have any of you tried lupron or know any migraine sufferers who have tried it? I have researched online and read about people getting migraines after starting medication but can't find any info about people who had migraines before starting.

There are several other side effects such as hot flashes, nervousness, depression and others that I already have and would be willing to put up with if I could get relief from pain. I am just worried about migraine problem.

Any input is appreciated!!

Hi Becky,

Been there. I was on lupron for 6 months for endometriosis. I was originally diagnosed with cystic ovaries but in the end it didn't explain the pain. Found the right Gyn and had the correct diagnosis.

I didn't have migraines at the time so I can't tell you what it might do, but mine aren't hormonal anyway and I think if they were you'd know. I know people that aren't chronic like we are that have menstrual migraines and they are an accurate predictor of that time of the month. Poor dears... Others that have them and have gone through menopause say the jury's out on whether they get better or worse anyway. Some do get better but at worse, they remain the same.

Because you will be in medically induced menopause, talk with your doctor about having hormone replacement therapy. I had an estrogen patch that severely cut down the menopause effects (no hot flashes and wild mood swings) but unfortunately gained some weight. It made it bearable.

Also afterwards...you may want to be on a form of birth control. Not because you are trying to avoid getting pregnant but to control the endometriosis. I was on the pill for a while and my periods were just horrid and my gyn suggested an IUD. I agreed to do it and have had mine for a bit over 4 years and it's been a blessing. No more horrid cramping pain, periods are really light (actually have one this month but I skip some months) and there have been a few other positives.

If you have other questions let me know but that's my experience and I was younger than you when I went through it.

Becky

I too have been on Lupron for endometriosis.

I had a complete hysterectomy 11 years ago..for me ..my migraines became worse..that and two auto accidents.

Praying, that you will get some relief soon..I know how painful that is.

Blessings,
Greeneyes

I also have a 24 year history with gyn issues. I have had six surgeries and the last one they took out my ovary.

We had hoped that this would help with the pain...but it didn't. Sadly, my last surgery had complications with the surgeon slicing a main artery that was not where it should have been, causing a whole lot of bleeding and resulting in even more pain.

I've begged for a hysterectomy for decades and they NEVER agree, saying that it would put me through instant menopause and that it would end my chance of having kids. Noone ever cares when I say I'm not having kids.

Lupron is nasty, and I would recommend looking other routes if possible. It made my migraines much worse.

I'd also avoid the depo provera shot at all costs.

There are many other BCP options to try to see if it helps.

My surgeries for endometriosis were not helpful in ridding me of the pain.

Damn...I'm sounding like a debbie-downer...sorry. Many BCP help many women with similar pain...and don't affect your head so much.

Good luck and feel free to PM if you have any questions that you think I could answer.

Hi,
I have no direct experience with Lupron but as far as I know, induced hormonal changes can be quite hard on migraine.
I've only tried the BC pill in the past but I had to interrupt it, I could not even finish the month. My migraines became daily and horrible.

It is also possible that your migraine worsens for the first weeks of cure and then you'll be fine. It often happens with side-effects. They appear at the begin of the cure but then, when the body adjusts to the cure, they disappear.

Take care

Milo,

What would you suggest doing? I'm in medication hell and don't mean to sound snarky and apologize in advance if I do. I suffered with endo for 4 or 5 years before finally agreeing to do the lupron because the first gyn (who was an idiot) scared me to death with it. I tried multiple types of bc pills and pain pills, nothing worked. Was just horrid - nasty pain.

I finally found a decent gyn who actually explained the lupron and how it worked to me and that's what convinced me to do it. I've never regretted it. But I didn't have migraines like I do now (just the occasional random one). Doctors here don't like to do major surgery unless it is absolutely necessary - endo doesn't classify as a necessity on a young woman especially when there are other non-surgical options.

Any thoughts or suggestions we can give her? My only thought would be to have a joint appointment with her gyn and the neuro so they can discuss what would be a possible course of action. I know Becky has a few other health issues as well and it usually pays to have the specialists talk if possible to see how one treatment might impact another.

Becky

Yes one of the possible side effects of lupron can be headaches. I have done three treatments cycles of lupron and honestly I did not notice a difference in my migraines at all. The frequency and intensity stayed about the same.

If you do decide to give it a try, I recommend the one month injection of lupron, rather than the three month injection. This way the side effects will not last as long. Also if the side effects are too difficult to handle you can do *add back therapy* which is basically using a small amount of estrogen to minimize the symptoms.

BTW...while it may work for some, a hysterectomy is not a cure for endo unless you have both ovaries removed at the same time. I had to have a second surgery after my hyst to remove my remaining ovary because the endo had flared again.

And none of this had any bearing on my migraines...we had hoped they would ease after surgery. But no such luck.

ShelliB,

Thanks for the info on surgery. I didn't know that. My doctor did say that it was an option, more just to confirm the diagnosis at that time.

I think this is another one of those that they can't entirely cure but manage....

I think asking your GYN to call your neuro for consult is probably the best idea. If your neuro supports the lupron, then consider it.

I too suggest the 1 month injection over the longer as you will need less time to "come-off" if it doesn't go well.

Thanks for all the great info and advice. I'm desparate. Between the migraines this unknown pain beleived to be endo and other as of right now undiagnosed pain I'm going crazy.

I have to call my gyno on Monday to let her know what I want to do and I have a few questions I want to ask her but I think I may proceed. She did tell me we would only do one month shot first to see side effects.

For those of you that have taken lupron what side effects did you have while taking it? Gyno told me to expect hot flashes, weight gain, nervousness, and depression.

Thanks for everyones input. I greatly appreciate it.

Side effects were typical menopause: hot flashes, weight gain, moodiness. I did have an estrogen patch that eliminated the hot flashes and that was a sincere benefit.

Hi. I have had endo since I was 14. In the 80's I tried Lupron as one of the first patients. It was being sold in the original package for men with prostate cancer. A palliative treatment. It was funny reading the info package for men complete with an anatomy lesson.

Lupron was being used off label for endo. Back then we were treated with the same high dossage men were taking. I thought I would lose my mind.I cried and cried and cried. I was in contact with Marylou Ballweg founder of the endo association and collected info from women who were trying lupron. Back then women were having severe bone pain and heart complaints. All from the high dossage. It took some time but they figured it out and now the highest dosage is half. I wish I had had the bone density test when they ordered it. I do have osteoporisis. Lupron has come a long way and these side affects have almost all been eliminated. Plus they use add back estrogen.

If you are worried ask the doc to let you do the daily inj. It will wear out quickly. Just don't do it at night cause the hot flashes will keep you up.
The monthly injection is in the body for 30 days.

After my first round I was thrilled with the reduction of pain!Then I would used the daily inj until I started hot flashes then stop. These took about 6 weeks of inj.but I was out of pain for months. I did this about 4-5 times.

My migraines were worse but I was on a very high dosage. I tritrated the doses after the first round.

Endometriosis is being considered an autoimmune disease because every woman has some retrograde bleeding but not all develop endo.

The location of the endo doesn't mean it will hurt there. You refer pain plus if you have endo on a ligament it will refer pain.
Hang in there.
kathy