New to the Group - Long posting

[Guest guest]

Hello everyone,

My name is I am 30yrs old and I am new to the Group. I have had EN for

atleast 3

years. I have only had 3 cycles so far and I went untreated for 2 years.

Actually, I am not

being " treated " just examined with hopes of excluding certain causes. My GP

insisted I just

was experiencing folliculitis as a result of ingrown hairs. I finally went to a

dermatologist

during my second outbreak.

I experience these outbreaks every 6-7 months during periods of stress. They

usually start

with one lump and by the time it heals I have another new crop to replace it.

These crops

usually last anywhere from 3- 8 weeks. They seem to be lasting longer with each

cycle. I

am currently experiencing larger more painful lumps. I have several on and

around my

ankles and shins that are just very large hard lumps. Not red and not really

painful. My GP

thinks these are just dormant.

I have been tested for everything that is normally worked up for EN and

everything is

normal. The only thing is that I have low Hemoglobina and Hematocrit, which for

me is

normal. In the last 6 weeks I have had two punch biopsies and just recently I

had a very

large, very deep excisional biopsy. It was off the third biopsy that I was

somewhat

diagnosed with EN. The Pathologist is calling it acute, chronic septal and

lobular

panniculitis with probable EN. I wish I knew what all that meant.

I was told that all the disease and medication causes have been excluded and I

need to

wait to see if any of the cultures grow..could take months with no guarantee.

Also, I was

told they don't think it is T-cell Lymphoma, but can't be sure yet. I cannot

tell you how

frustrating this is!!! I am sure everyone has been through this and still are

going through

this...It is just very painful. I mean my joints and bones hurt alot of the time

and I feel

really tired. I have three young children and I am a full-time student so all

these doctors

visits are hard.

I am being treated by a dermatopathologist who has been working with her

collegues at

the University in Irvine, Ca. She has recommended I try to find someone with

more

extensive knowledge than she has...at least she is honest. I am trying to get in

with a

proffesor over at the UCLA Medical Center..he has over 30yrs experience in

Pathology.

Guess I will just have to wait and see what he thinks of my tissue slides. I am

just really

grumpy about having more biopsies. My poor legs are already scarred by these

lumps.

They heal and leave a scar that looks like a bruise and some actually leave a

crater where

the lump used to be. I currently have about 8 lumps on each leg and some are old

and

healing and about 3 of them are new. This is the longest I have been in the

active phase

and I am going on my third crop of lumps in one phase...guess they just change

with every

new outbreak....

Has anyone else had any experiences with the biopsies???? Do they help with

diagnosis at

all???

Looking forward to hearing from you all....

[Guest guest]

Dear ,

I can't give you any personal experience with the biopsies as I have

never had one. A dermatologist saw my legs 5 years after my first bout

of EN and identifed EN on the spot. That was over 30 years ago and I

think it was more acceptable then to diagnose by history and clinical

presentation.

I imagine you aren't taking any meds for the EN, right? I have never

taken meds myself. I do find that bedrest and leg elevation are

helpful to resolve the lumps, and go into " remission " . I know that

will be hard to do with children and being a student.

I agree with your dr. who noted that the lumps that were not red or

painful are " dormant " . Once the lumps are in full remision, they

should not even be raised. I do feel that wearing a support stocking

helps me. You may want to give that a try.

Let us know of your experience with your new dr. We have a database

where you can add his contact info if he is worth recommending.

I apologize to the old members for repeating my story, but I thought

it the easiest way to tell how things may go if no trigger is

found. That's right--36 years of EN in and out of remission and still

don't know what causes it, except that like you stress does seem to

bring it on as does standing and being on my feet for long periods.

I added your info to your " case history " , .

I hope you do go into remission soon!

Love,

[Guest guest]

as a result of ingrown hairs

That is the most hair brained diagnosis I have ever heard.

That beats mine when I was told I was having a nervous breakdown.

I put that doctor back on his space ship and sent him back to mars.LOL

Jim

[Guest guest]

> In a message dated 10/30/2004 7:48:55 PM Eastern Standard Time,

> mrshardison@y... writes:

>

> > as a result of ingrown hairs

>

> That is the most hair brained diagnosis I have ever heard.

> That beats mine when I was told I was having a nervous breakdown.

> I put that doctor back on his space ship and sent him back to mars.LOL

>

> Jim

Wait Jim...it gets better

Earlier this year I was having a lot of abdominal and pelvic pain...and my

hormones were

really out of wack. It went on for several months and since I am only thirty my

doctor

wrote it off as some sort of PMS. He even prescribed me Zoloft???? I finally

convinced him

to get an ultrasound which I would pay for if need be!!! It turns out I had an

Ovarian tumor

the size of Texas. Needless to say that he and his spaceship were sent where the

sun don't

shine:)