sex-life with Lymphedema

[runnermom]

Hi,

I guess I have genital lymphedema. Probably as a result of lymphadenectomy to stage ovarian tumors back in 2009. During my recent pregnancy (my baby is now 7 months), my obstetrician made it sound like the swelling would go away after the baby was born. She was wrong, to say the least. I'm working with a certified therapist and have ordered a custom garment (which I've been waiting for since October).

I've had cellulitis 3 times since my baby was born. Every one of those occurences has been within a week of having sexual intercourse with my husband -- the handful of other times we've had intercourse have been while I'm on antibiotics. Does anyone else out there have an active, enjoyable sex-life??? I need some hope! I can't find a doctor with anything informed to say about LE, let alone how it might impact my sex-life. (Those few docs familiar with LE have only dealt with upper extremity cases and in much older patients.)

Also, I fear another pregnancy would absolutely ravage my poor, broken body. I'm interested in adding a second form of birth control (primary being condoms). My gynecologist seemed to feel that I'm at an increased risk of blood clots and advised against any hormonal birth control. But, I'm super concerned about the increased risk of infection associated with an IUD (especially since my lymphedema is absolutely the worst in my pelvic/genital area and I keep getting cellulitis there). Any females out there who have experience with this matter?

Thanks much!

"runner mom"

[Cassie]

Hi, runnermom,
I can't speak from my own experience on this (I have upper body truncal and arm lymphedma), but I just wanted to tell you I'm sorry for the discouragement and frustration you must be feeling with this. I can suggest from my own experience that with recurring cellulitis you might get help from an Infectious Disease specialist who's familiar with lymphedema -- not easy to find, perhaps, but worth the search! Sometimes a low-dose long-term antibiotic can help when the cellulitis has been coming back repeatedly, and an ID doctor could help you work that out. I do hope others will be along with their personal stories of what helped them. In the meantime, hugs and hopes for a quick and lasting solution!
Cassie

[erivertown]

Dear Runnermom,

Cassie and Pat have asked me to respond to this. I am a licensed Occupational Therapist and Certified Lymphedema Therapist and owner of my own lymphedema clinic as well as one of the moderators of the group.

This is a question that has not come up before and so I'm going to address this from a professional point of view.

Cellulitis is caused by bacteria entering the tissue through openings in the skin, generally wound type openings. Even the smallest opening can be a portal for bacteria to enter. Your lymphatic system is a major component of your immune system. When you have damage to the lymphatics, as from your surgery, the lymphatics to that area of the body -- in this case, the lower pelvic area -- has compromised immunity because the cells that normally take care of bacteria that enter the body cannot get through the lymphatics in sufficient quantities to control the bacteria and cellulitis results.

The best way to prevent this bacteria from entering the body is to remove it from the surface and that means a good cleaning with soap and water. Antibacterial soap is good but not necessary; a good washing will clean 99% of bacteria and other germs. Since you contract cellulitis each time you have sexual intercourse, it means someone is carrying bacteria on their skin -- either you, your partner or both.

Prior to having not allowed, be sure to cleanse the vaginal area thoroughly and pay special attention to the vulva and labial folds. Wash again immediately after having not allowed. In addition, your partner should make sure his genitals and pubic area are also clean. If a condum is used, wash the outside of the condum (after donning) as it is unlikely they are manufactured under sterile conditions. Anything that comes into contact with your genital area must be clean. While careful attention to cleanliness will go a long way to reducing the risk of contracting cellulitis, it won't eliminate it entirely and so I would also strongly suggest keeping antibiotics on hand and take them at the first sign of infection.

As for avoiding another pregnancy, there are two things you can do: allow at least one week before your normal menstruation (period) and at least one week after the menstruation before continuing sexual activity. Secondly, have your partner wear a condum (and follow the cleaning instructions above). Otherwise talk to your doctor about other methods of birth control.

With regards to controlling swelling in the genital area, I would like to also suggest that you consider purchasing a Swell Spot (by Solaris Medical) to place inside the compression garment. This is an inexpensive manufactured pad designed to fit certain anatomical areas to reduce hard-to-control swelling and will provide additional compression to help reduce the swelling to the genital area. Go to http://www.solarismed.com, scroll down the left sidebar to "Products" and click on "Swell Spots". Some models to look at: Labia Swell Spot (# SP-15-F), Sweet Spot Swell Spot (# SP-19) and Oval Swell Spot (#SP-04).

Hope this helps.

Tom

[runnermom]

Thanks to Cassie and Tom for responding to my post. I am still hopeful that there are other women out there who might be willing to share what they've found to work best in terms of preserving sexual intimacy and preventing pregnancy while also dealing with lymphedema.

Tom, I have to admit I was initially angry to read your response. I feel maxed out already, in terms of caring for my baby and trying to care for my already burdensome health condition. There is no way I'll ever have intercourse again if your proposed solution is the only solution. For now (for anyone out there interested in this problem but too timid to speak up with a post), I'm just trying to use Summer's Eve personal hygiene wipes whenever I use the bathroom and before and after intercourse.

The infectious disease doc can't see me until the end of March, but I'll be sure to discuss all of these concerns with her. Thanks for that suggestion Cassie -- it honestly hadn't occurred to me to look for that kind of doc.

Still, I'd really like some support/mentorship from other women out there. I've read plenty of posts on the theme "life doesn't have to stop just because of lymphedema," so I'm really interested in an explanation of how one keeps his/her sexuality alive in light of the compression, wrapping, infection, and pregnancy concerns.

Thanks again! I'm glad I found all of you