It seems that I have swellling inside the female organ

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It seems that I have swellling inside the female organ

Postby Shirley Hogan » Mon Sep 04, 2006 12:56 am

Took the tests to see if I had cancer back, because of what the ob/gyn, was concerned about. But it turns out that I am swollen in the vagina. The radiation has shrunk the whole inside, and killed off most of the lymph nodes in the abdomen area. Told the lymphedema clinic doctor and he is thinking of putting me in a hyperbaric chamber next week to reduce the swelling, and take care of some of the broken skin areas that are so sore. He used kinex tape on Thursday to open the lymph path to help me some. I could use some help with knowing what is best to do. My first therepist has left and I see another one this coming Thursday and I am to call the doctor back on Tuesday to see about the chamber. Thanks Shirley
Shirley Hogan
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Postby donsuzbee » Mon Sep 04, 2006 12:27 pm

I went thru a time of my PT leaving and having to wait to see another one. But it was worth the wait. I guess the best to consult about LD are the PT's. I have used kineseo tape also. I think it really works if used consistently.

God bless!
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Hello donsuzbee, thank you

Postby Shirley Hogan » Mon Sep 04, 2006 5:47 pm

Thank you again donsizbee. I wish that Terri had not left just now, but thats okay. I was looking for another clinic, and its not as convenient and they would be new too, so will wait and see how this next one will be. The doctor was very nice and it seemed he cared what was going on with me. The chamber sounds like it is very therepudic and that is good. Guess I am still a little in shock still so I am glad to be able to talk about what is going on. Still a very lot to learn. Thanks to Pat, there is so much research just here to read yet. Some day all will fall in place eventually I guess. I am not so afraid of it now, with the stories from you all , gives me hope that as long as we try to take the steps, take care of ourselves, watch for the bad signs, and tell our doctors, we will be okay. Thank You, Shirley
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Postby silkie » Tue Sep 05, 2006 1:58 am

Hi Shirley

I am in the UK and my practioner has just retired

I miss her she was more like a friend and i tursted he totally

The new therapist has a big task ahead of her taking over from Denise

it must be very hard stepping into her shoes but she also bad to get her own routine of management of her department established to

I see her on the 11th of this month funnily enough to learn how to tape my shoulder with kinesio i use it on my left arm and my knee th thigh

i think its brilliant easy to learn how to put on and much less bulky or restricting as the garments. Some people get a reaction fron the adhesive
but other than that it seems to be successful. I find it brilliant especially for mobility and flexability to go out somewhere special i love to use the tape i feel less mummified and i get around better

Good luck with the treatment

And you are right learning about lymph is on going it is Great that
Any new research or developments Pat is always there with sound advice and information links

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thank you Silks for post

Postby Shirley Hogan » Tue Sep 05, 2006 11:45 pm

Image You seem to have lots to tell us to, that helps Silks. You also seem to have had quite a battle with this dern thing. I agree about that tape but I will have to get on the line and see where I can buy some. I asked at the 2 stores in town here which are medicare health aids stores. Both didnt have that kind of tape, and one said they would try to order in some. They had applied it at the clinic last time. Terri had given me some before she left, I didnt see her any more after that. I found that after cutting the tape into strips and then applying was a litle difficult but guess I will learn how to do that too hehe.
All take care and hope you all had a nice weekend. ShirleyImage
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Postby silkie » Thu Sep 07, 2006 1:16 am


You can buy it on line and most suppliers can give instructions on how to cut and apply tape to certain area i believe

There is a great section of information here on Genital lymph
Even if you do not have it I would recommend all lympher read it

As it is something that is a big possibility for all of us and
For so long something people didnt alk about but kept hidden

Genital lymph can be helped as can all areas of lymph
but sitting on the problem because of embarassment is the worse thing you can do
So everyone Read up on it. Find out all you can if it happens to you please Talk about it or come to Pat or myself dont be embarassed


Silks xxxxxxxxxxxxxxxxxxxxx
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Postby coyote » Sat Sep 09, 2006 5:28 am

I agree with silks about reading up on the genital LE, especially if you have LE in your legs or abdomen. I developed genital LE around the time my therapist used a pump on my legs and so, I thought it was because of that (despite the precautions my therapist used).

In retrospect, I believe I may have had genital LE before that. Especially for those of us who do not have a spouse or partner, it is really easy for this form of LE to sort of creep up on you...once you have it, it is very difficult to get rid off, based on my own experience with it. It is very difficult to get compression of the area, especially if you are overweight as I am.

Also, it can act very differently than other forms of LE. For instance, I have lymph fluid that I would swear leaks out through the pores in that area. This doesn't happen anywhere else in my body and I have LE everywhere.

Good luck with the new therapist, Shirley...I have had three different therapist do LE treatment on me and I have found that I learned something different from each one of them.

Sorry to hear that Denise retied, silks, I know you really had a strong bond with her. Hopefully her replacement will be as intuitive and caring!
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Thanks so much for the post Coyote

Postby Shirley Hogan » Sat Sep 09, 2006 10:11 am

I was with the lymphedema doctor on Thursday. We agreed to wait on the chamber because the tape really did well in gettintg the lymph to move. Even the sores are not so bad now with taking the antibiotic my regular doctor gave me. I am still puffy in my stomach area but not as much. My DVD Tape on Lymphatic Drainage Massage arrived. Boy was I doing it somewhat wrong and the dvd sure helped me to see how to clear it right. Expecially in the throat area cause I was just going to my under arm, and according to the tape you must clear it where it drains down into the heart. Also I was pressing much to hard to try and break up the lymph in my foot. I still have loads of reading to do. The doctor at the clinic told me that even he does not know how to do the lymph drainage, and I would have to wait till the new therepist comes to ask questions. I think that the clinic is more for wounds than lymphedema. But they are very kind there. I made a promise to myself to read everything I can on this lymphatic system, it's just too bad that there are not many specialists in the field. All have a great weekend now :) Shirley
Shirley Hogan
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Postby marigold » Sat Nov 11, 2006 6:03 pm

Silkie said: "sitting on the problem" is not good....but hey, Silks, we HAVE to sit on this particular problem! :lol: :lol:

Coyote said she is leaking fluid. Yes, the genital area is such a logical place for fluid to leak out. First, the skin tends to be thin and porous. Secondly, there is gravity...the fluid finds an easy place to just drip downward. And so true that the problem is easier to ignore if you are sexually inactive! That was my situation. When the leakage began, I instinctively knew what was happening and why, even though I saw two doctors who didn't. As the problem v e r y g r a d ua l l y worsened, I was able to ignore it, except for wearing ever-stronger pads. When the LE went into my lower leg (having been in the thigh and genital area only for many years) THEN I started worrying. But by the time I was able to get therapy, the genital problem was a huge concern for me, especially as I had started dating again and expected that my celibate state might change! Even without that, the pain and discomfort had to be dealt with. My therapist has obtained various garments that are supposed to help...but they are so bulky that I just cannot wear them out of the house...unless I wear a muumuu, practically. And they are uncomfortable for sleeping in as well.
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No pain. Just very uncomfortable!!!

Postby MSJUCBBBW » Sat Nov 11, 2006 7:46 pm

:( I hope some1 can shade some light on this for me!! yesterday i was here at work I started feel bad. All at one time I feel like fire was in my pelvic area. Now everyday I wear protection, just for the sake of it.. I like wnt home before i could get to the bathroom, clothes were soaked.. Now I'm not being nasty, but I had coths big as golf balls falling out of me. I'm not sexual at all, so I know it couldn't been a baby.. So I showered n everything.. Lay down n 2 day there is nothing..

Now for a little background on me..

I'm 5*8 about 425lb. my legs r huge now. unbearable bumps.. I spot just about everyday...dark spots r just ugly...

I am so lost on what to do.. I'm not giving up it just so unbearable now with the coths. I don't have the pain like I use to...

Really not sure what to do :( :roll:

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Postby silkie » Sun Nov 12, 2006 2:29 am

Hi Tracy.


You have to your doctors hun

Losing like this you need to see someone now.

The legs sound terrible infected You should be on some form of anti biotics

This is not a fix yourself condition hun

You have to find out why your bleeding losing like this

and you need to get help for the infection.

Please let us know how you go on.


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I Need Help...

Postby PRThomas » Tue Nov 14, 2006 12:43 am

After coping with LE for 10 years now in my lower left leg, it's starting in my are. I've never had cancer---just woke up one morning with a red swollen foot. I wear compression hose and I've learned that my LE is affected by heat and sodium. I am about 60 pounds overweight. I never once have considered that the LE mignt spread to other areas of my body; so I've never considered therapy. When my arm began to ache 2 months ago, I thought that the aching was muscle soreness. Two days ago, it dawned on me that it's the LE and I am emotionally devastated. This seems like some curse. Just as I'd convinced my self that it was OK to wear dresses again and that maybe I could live a normal life with this thing called LE----it's spreading. I need to know if weight loss, will help with LE. Also, I live in Lancaster, CA and there are no LE therapists here; nor are there LE specialist. Most of the doctors that I've seen in this town are not informed about the disease. I am 46 and very afraid of what the rest of my life is going to be like.
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Postby silkie » Tue Nov 14, 2006 2:22 am


My LE is primary it bega around puberty

Both my legs were effected

Recently my left arm is effected to

and now my shoulders

nothing major but it is beginning to be painful and cause the occasional

hic cup. The shoulsers are the most painful but that to i am learning to cope with

PT it is a new learning experience for me to

It not easy and YEA why me????

Why me WHO knows??? what i do know is that it is me

and i need to live my life not live the lymphedema

I no longer worry what people think of my legs

or what i wear As long as i feel good i dont mean comfotable

i feel good about myself.

What other people think is their problem let them worry about it

Taking care of the lymph daily the routine mld

Wearing those glorious not allowed supports and wrapping every night

helps me live my life and gives me a better chance of keeping my body in the best condition so that the years to come i will be prepared with skin care and excerices for my limbs to be as mobile as they can

The care i take today is helping my limbs to be prepard as best they can for tomorrow

Kinesio taping has really been good for my arm and shoulders

chesk out the information on here
also there is a list og therapist in all area of the USA here
check out there could be one a bit nearer for you

Live your life PT not your lymph the better you take care of yourself your condition today helps your future living with lymph

Live your life not your lymph you are so worth the effort


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Thank You

Postby PRThomas » Sat Nov 18, 2006 3:52 pm

Thank you for your words of encouragement. Have you been able to continue to work with your LE?
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Postby silkie » Sat Nov 18, 2006 5:16 pm

Hiya PR

No unfortunately i could not work. Although i feel
many of us could if we worked from home and could work in between the dropsey i call it and take breaks when our body needs them and not clock watching.

I am up many hours some nights i get so much work on the pc done at this time

I do manage to still do my hobbie painting i do research on the pc and the forums

I have found more satisfaction in the last few years but

understand i have a different set of problems here in the UK than my lymph family in the USA

I was a workaholic it took a while to adapt and find a different way of
finding satisfaction and a challenge but i think i found something better even if it took lymph to make me stop and find something new

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