Hysterectomy with pre-existing lymphedema

scar lymphedema, upper limb swelling, sirolimus-treated patients, limb volume, Massive Localized Lymphedema, Toxoplasmosis research papers, surgery pain, tattoos, hysterectomy, lymphedema side effects, causes of lymphedema, head lymphedema, eyelid lymphedema, insect bites, rosacea, elderly lymphedema, bioimpedence

Moderators: jenjay, Cassie, patoco, Birdwatcher, Senior Moderators

Hysterectomy with pre-existing lymphedema

Postby patoco » Sat Jun 10, 2006 3:23 pm

Hysterectomy with pre-existing lymphedema

Discussion started by Debbie 05/20/2004

I'm 44 and have LE in my left leg (thigh to toes). I have to have a hysterectomy and I'm worried about the dangers this will cause me.

I was wondering if anyone else has had surgery when they already had LE.

It is preventive surgery (I have a fibroid and cyst) because my mom died of ovarian and other cancers when she was 48. (My four grandparents lived to their 90's!). I have always wanted a hysterectomy since being done having children and I thought I'd have a tummy tuck (not to wear bikinis, I don't even wear shorts or bathing suits anymore with my LE, but to get rid of excess skin to look better in pants) while I'm at it. I saw 2 plastic surgeons this week and they said I have an umbilical hernia that needs to be fixed, so I may have three doctors in the operating room! The hysterctomy which I really need is the one surgery that really frightens me.

I've spoken to my massage clinic and each doctor. No one is totally discouraging, but then again, there are no promises and guarantees. I thought maybe if someone out there has been there, done that, I could find you here.

Wishing for a cure

...........

Responses

Pat

Hysterectomy and Existing Lymphedema

Hi Debbie

Wanted to update you on what I have found. With pre existing lymphedema, there is always a chance that any type of surgery may increase the lymphedema. That being said, the really good news is that the absolute over whelming evidence supports the position that a non-cancerous based hysterectomy will not make your lymphedema worse.

In situation after situation the examples used that it will cause lymphedema was based on surgeries for cancer biopsies that included removal of surrounding pelvic nodes. If the surrounding pelvic nodes are left intact, you should be ok.

What I would do to make sure is specifically have it understood with the doctor that no nodes are to be removed. They will automatically (or should) do a biopsy of the cyst and fibroid. If those come back negative, there is no reason to remove a node.

On your questions of any surgery making lymphedema worse, again from my experience the overwhelming evidence is no. I even had an ultra-sound guided small needle biopsy of the linguinal node (right leg), that did not cause any worsening of the lymhphedema.

As I mentioned previously, also make sure you are placed on a preventative antibiotic therapy. This should help prevent any cellulitis. By the way, through all the surgeries and biopsies I have had, I have not experienced cellulitis or lymphangitis as a direct result of surgery.

I will post any update I find. This is my humble opinion based on my personal research and 51 years of lymphedema experience as I am not a medical doctor.

Take care

Pat O'Connor

----------------------------------

I also wanted to post Nancy's response here as well:

dear debbie,
i actually had puffy legs for as long as i could remember and my daughter does now too. she is 24yrs old. i'm 44yrs old. but, the most swelling that i ever had did come after i had the hysterectomy. not right away. i really can't remember how fast it happened. all i know is that i was riding my bike alot and was bruising alot and then i changed drs and asked the dr why i was so swelled and couldn't lose weight. she looked at my legs and said "lymphedema".

i may have had it all my life but, the hysterectomy triggered it. what you definitely need to tell your dr is that you need to know if he removes any lymph nodes when he does the surgery. also let the nurses know ahead of time about where you already have LE b/c you don't want them sticking you there at all.

also if you can, before the surgery have them take at least 1 pint of blood for during the surgery, so you won't have to take a strangers blood if you need a transfusion. you can also have family members that match your type donate blood before hand. (but it usually costs over $100. to store it so they charge you for it, but it can be worth it if its saves your life, it also depends on the blood service as to if there is a charge).

if you wrap regularly and also have MLD done regularly you need to let the nurse and dr know this so you can be wrapped during the surgery and you can have a therapist do MLD while you are in the hospital. also the nurses can know how to deal w/you if any problems arise. other than that i don't know what to tell you. pat being in and out of the hospital probably would know more about that part of the procedure.

i responded well to the surgery and was released 4 days after. i could of went back to work 2wks after, but my dr didn't release me till 4wks. then i was raring to go. i was so happy i had finally got rid of that lump of potatoes that had been killing my back for years. no more periods, no more hemoragging and no more pain. i had EVERYTHING taken out. remember that you will need HRT (hormone replacement therepy) b/c you will be going thru what is surgical menopause (unless they are leaving in your ovaries, then you will still have the hormones going thru you system). i started dealing w/night sweats the second night b/c there was no hormones running thru my system so i started sweating heavily in the bed. the dr gave me an HRT Rx when i was discharged.

i thought the surgery and stitches would hurt. but what hurt was the gas that was trapped inside my body after the sugery. so if your in big pain ask them to check for gas. i wasn't moving and the pain was horrendous. the night nurse turned me over and then i started moving. no more pain the next day. they will expect you to walk the second day after the surgery. it shouldn't be painful. they will also give you stool softeners for your first bowel movement. you will also feel different inside. i was numb in the abdomen area for 6mos after the surgery. the only thing i felt was when i had bowel movements and urinated. that will feel different too. but don't be alarmed.

if you have any more questions write me personally if you want at dotterofthemoon@yahoo.com.

take care,

nancy

----------------------------------

Debbie

Thanks Pat and Nancy for responding and telling me your experiences and knowledge. I'm taking notes on what you tell me so that I can relay it to my doctors and nurses. Any updates would be greatly appreciated. My operation may now be in August just to find agreeable times between all parties involved. I find out for sure this week. In a way, I hope it isn't until August so I can enjoy more of the summer with my family before I enter the unknown. (I don't want to even think about the hormone problem which would probably be my top worry if not for LE!)

Again, thanks! I'm glad I found you.
Debbie
patoco
Site Admin
 
Posts: 2175
Joined: Thu Jun 08, 2006 9:07 pm

hysterectomy

Postby Teddi » Mon Jul 31, 2006 2:26 am

I had one ten years ago - they took everything. I don't know whether I had the lymphedema then but I've been told that it's a good bet that I did. I had no trouble with the operation and was released a week later and raring to go. Although I had everything out, I did not get hrt and the only effect has been a few chin whiskers which are easy enough to pull.

Now I'm being told that you cant heal when you have le and I can not understand that - I heal great but I need this growth on my leg removed and cannot find a surgeon willing to do it.

Hope you have better luck with your doctors.
Teddi
 
Posts: 39
Joined: Thu Jul 27, 2006 8:11 pm
Location: Marble Rock, Iowa

hysterectomy

Postby Teddi » Mon Jul 31, 2006 2:27 am

I had one ten years ago - they took everything. I don't know whether I had the lymphedema then but I've been told that it's a good bet that I did. I had no trouble with the operation and was released a week later and raring to go. Although I had everything out, I did not get hrt and the only effect has been a few chin whiskers which are easy enough to pull.

Now I'm being told that you cant heal when you have le and I can not understand that - I heal great but I need this growth on my leg removed and cannot find a surgeon willing to do it.

Hope you have better luck with your doctors.
Teddi
 
Posts: 39
Joined: Thu Jul 27, 2006 8:11 pm
Location: Marble Rock, Iowa

Re: Hysterectomy with pre-existing lymphedema

Postby Minnie » Mon Jan 12, 2009 8:16 am

Just got back to these forums and thought I update on my condition. Thankfully, the hysterectomy went as scheduled and, to date, there has not been any complications. No lymph nodes were touched. I still have LE in my left leg and it is the same as it was before my operation.

Hope this can help someone else who may have the same concern.

Debbie
Minnie
 
Posts: 9
Joined: Tue Jan 30, 2007 9:11 am
Location: Maryland


Return to Lymphedema Information

Who is online

Users browsing this forum: Yahoo [Bot] and 3 guests