Lipedema is when fat is stored in the wrong layer, usually on the butt, thighs, around the knee, lower belly, and sometimes arms. It’s almost always symmetrical, and almost always triggered by puberty or menopause – when there are big hormonal changes. It often occurs after surgery, and almost only in females. It is painful and debilitating.
This wrongly positioned fat puts physical pressure on the lymph system, and stretches out the skin – tight skin is required for the lymph system to work correctly. This is why lymphedema often develops from lipedema. Exercise without compression to simulate tight skin will make it worse.
Lymphedema is where arms and/or legs swell. It is usually one-sided, and happens when when your lymph system doesn’t work. It often occurs after lymph nodes in the groin or armpit were removed during cancer treatments.
Lymphedema treatments focus on:
- reducing the water load with diuretic medications.
- fixing the lymph system using regular manual lymph drainage (MLD) massage and compression clothing or bandages.
- weight loss.
There is very little research into lipedema, and it is still usually misdiagnosed as pure obesity. But this particular type of fat doesn’t go away with diet and exercise. Nothing seems to alter this improper fat storage behaviour. In fact, you can be severely anorexic and still have lipedema.
Around 11% of women have lipedema. Although, the vast majority of these women remain un- or misdiagnosed.
Lymph-sparing liposuction is the only treatment that shows any clear improvement in symptoms. It is currently only available in Germany and it is not covered by insurance. At $5000+ per target area, it’s prohibitively expensive.
You can use MLD massage and compression clothing to prevent the worsening of secondary lymphedema, but there’s no promise that these treatments will help lipedema symptoms.
Endometriosis treatments cause big hormone changes
I’ve had so many treatments and operations for endometriosis over the years:
- Visanne for nearly two years, then another year after taking a short break.
- Complete hysterectomy in 2015.
- One course of Lupron in 2014, and two courses of Zoladex in 2000 and 2008.
- Five laparoscopies between 1999 and 2015.
- Twelve years with three different Mirena IUDs.
- Countless implants, and birth control pill experiments.
No-one said that any of these could damage my lymph system. This seems pretty obvious to me now, as you are cutting into and inside the pelvis during operations and the hysterectomy. And no-one said that drastic hormonal changes can trigger lymph problems.
A chemical menopause counts as a drastic hormonal change, doesn’t it?
Endometriosis treatments affect the lymph system
“Water retention” is listed as a common side effect of Visanne and other progestins. Lymphedema is a side effect of Lupron, and ‘puffiness’ is a side effect of the Mirena IUD. Hysterectomies have been linked to salt and water retention, as have imbalances in women’s sex hormones.
It’s relatively clear that the medications and treatments that play with our hormone balance can and do cause lymph problems.
One wide-ranging review paper suggests that estrogen may be a primary trigger for lipedema.
Endometriosis medications and hysterectomies all drastically alter the hormonal balance, so they could potentially trigger either illness.
Lipedema as a result of endometriosis treatments? Maybe.
No one can say for sure what my trigger was.
I only know that I started developing symptoms around the time of my hysterectomy, just after the treatment with Lupron. The edema continued to develop quickly while taking Visanne.
It has worsened alongside my arthritis at about the same rate, so there may be an inflammatory link.
After contacting the endometriosis clinic in Berlin, they suggested I stop taking Visanne to see if it changes the amount and/or painfulness of the edema. If not, then Visanne is not the cause.
That’s what I’m doing now. I’m wearing compression clothing whenever I need to be on my feet, sit for a long time, or exercise. And I’m trying to get the docs to prescribe me MLD massage, but so far, no luck. They will be sending me to a specialist lymph clinic in the near future.
It’s too early to tell if the hormone pause will continue to help, but I lost 5kg and two dress sizes in ten days immediately after I stopped taking it. They’ve said to stay off it, and see what happens in summer.
Have you experienced edema of any kind with your endometriosis treatments?
Please let me know in the comments below!