Dysmenorrhea Re: Dr App't

[Guest guest]

My 21yo daughter Penny has just been through the most horrific period of

dysmenorrhea lasting several months, every day. I recently wrote about this

and received support from this forum. She eventually had a laparoscopy and they

found something on her womb that was benign, looked like scar tissue, but could

not really be identified. This was removed and the pain went away (hallelulia!)

The gyno was perplexed. This was several months ago, but now her pain has

returned, only this time limited to a week before her period and it seems to go

away when her period starts. So far there has only been one cycle. When it

happens there is nothing she can do to ease the pain. The gyno wants to give

her another month of being on the pill to see what happens.

Around March we will find out if she has inherited mito from me, but it looks as

though she might have as she is getting numbness, restless legs, exhaustion etc.

The fact that they couldn't readily identify the " lesion " makes me wonder if it

could be mito related. Our family doctor said it could have been a previous

episode of bleeding which left scar tissue but the gyno was not willing to put a

name on it . Anyway all the discourse is very interesting.... pamela

Re: Dr App't

Hi ,

I'm so glad you found a doctor who is knowledgable. What a huge

difference it makes!

Regarding your comments about your hysterectomy, do you remember what

it was they found in the uterine muscle? I would have thought the

endo alone would have explained any pelvic pain you had but apparently

there were other causes, too. I've had lifelong dysmenorrhea which

has become even more exacerbated recently so I'm trying to figure out

what to do. (I don't have endo).

Thanks,

Shayna

>

> Went to see the genetic specialist in pitts. on Tuesday. It went

> well. I really liked the dr and all of his staff!! It was WONDERFUL

> to actually go to a dr that was interested in all of my symptoms and

> did not think it was strange. IT was fantastic to go somewhere that

> they all are so KNOWLEDGEABLE about mito and other diseases. I am

> so used to seeing neuros and other specialist that say biopsy looks

> fine and neuro exams are fine so they do not know what is wrong and

> out the door I go. It was a nice feeling leaving the office

> thinking that I may get some answers soon and if not answers, some

> understanding.

>

> I was told that BOTH of my open muscle biopsies did NOT actually

> test for mito..nice, huh?? The respiratory chain was never looked

> at. Dr will see if any pieces were left and frozen correctly to do

> the testing on.

>

> We were there for 3 hours and constantly with a genetic counselor

> and nurse and then the doctor came in. They took a thorough family

> background. When the dr came in he said that he feels there is

> reason to look into the possiblity of mitochondrial

> myopathy....especially with my mom's digestive problems and

> migraines and now mine. Also some other family stuff.

>

> 11 tubes of blood, including looking for genetic markers. The rest

> is just usual testing for mito and usual testing, which some have

> NEVER been done. Some of the tests might take 3 weeks for results.

> Next step would be a skin biopsy and then last resort would be a

> muscle biopsy if needed.

>

> Even though he feels mito is a possiblity, he feels that I also have

> an underlying problem....he even said...this usually occurs with

> mito. IS A HIGH ANA USUAL IN MITO? couldn't remember.

>

> He was very cautious, for which I am glad. I just want to make sure

> mito is ruled in or out...it has just always hung over me since

> another Dr. mentioned the possiblity. With mito being such a rare

> and complicated disease it is just very reassuring that he is so

> familiar with it and will hopefully either be able to say yes or no

> once everything is in. He did go further into saying that it may

> not show now because sometimes it does take awhile to actual show in

> testing. It has been 10 yrs so I am hopeful that this is the right

> time with the right doctor to get diagnosed.

>

> FEW OTHER THINGS:

> after being at his office for about 20 mins I began to hurt all

> over. By the end of the app't I was soooo tired (it was long

> though) When we got home at 4 pm I went to bed for 2-3 hours,

> asleep again by 11, up at 7 am, back in bed at noon almost all

> afternoon. On top of that, IBS flared up. This was the pattern til

> friday. The office was very warm...felt about 80 and I had a

> sweater on. It was so warm that I started to even feel my fingers

> swell. ANY THOUGHTS??

>

> Toprol XL: I have been taking it for about a year for tachycardia

> and have had no problems with it.

>

> Dysmenorrhea: Had this for many years, but also had endometriosis.

> Had a hysterectomy last year and they found fibroids on top of

> uterus along with something in the muscle of the uterus. Gynie said

> the muscle thing was possible when they could not find anything on

> ultrasounds or testing to explain the pain I was getting.

>

> Laurie, good luck with the new med for cramping!!! I truly feel for

> you. My fingers will occasionally do that, but I can straighten

> them out...sometimes it does not work, but it doesn't last long and

> it not too frequent. Very painful though. I hope that you get

> relief from it.

>

>

>

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