Will endometriosis always re-grow?

Unfortunately, too many doctors and parents claim that period pain is “normal.” Heavy or irregular bleeding is often ignored. Many of those with painful periods have endometriosis, where endometrial cells found in the uterus lining grow elsewhere in the pelvis, internally bleeding every momth.

Endometriosis can cause serious problems, including ensuring chronic pain, infertility, and irreversible damage to the organs inside the pelvis. Laparoscopies and endometriosis medication can also cause lasting damage to the body.

How quickly endometriosis cells grow is different for everyone. Some never have problems again after an operation, having a child or entering menopause. Some must stay on synthetic hormones to suppress the endometriosis. Some have to undergo regular operations, cutting away more and more.

Never ever do this …

Don’t tell young girls that period pain or heavy bleeding is _‘normal’ _.

Never tell any woman that they are faking the pain, and _just seeking attention _.

Just because you can’t see endometriosis on the outside, doesn’t mean it isn’t real. It’s debilitating and disabling.

If you ignore endometriosis, it will make you pay, _for the rest of your life _.

Laparoscopies can’t remove all endo

Endometriosis cells are too small to see with a naked eye, or even a magnifying camera in your belly during a laparoscopy.

It’s no wonder that some cells are missed.

Of course, the larger visible growths can be cut away. And this usually resolves a lot of the pain and infertility issues that led to the laparoscopy.

But the tiny, unseen deposits of endometrial cells usually remain.

That’s why it’s important that samples are taken from the ‘good’ sections of the pelvic walls and organs.

If the laboratory finds there are endometriosis cells in many of these samples, you can take a medication to slow their growths, or try to shrink them away.

You can’t get rid of endometriosis

Too many people are surprised that even after –six– now seven laparoscopies, with the surgical removal of endometriosis growths and adhesions each time, three chemically-induced menopauses, and now a total hysterectomy, I still have endometriosis.

Samples taken from various healthy-looking locations inside my pelvis contained these ‘bad’ cells.

Had the lab not tested, I would have stayed off medication - the lasting side effects of constant dienogest (progestin) are not pleasant. Originally, surgeons here in Germany wanted me to stay on Visanne until menopause, attempting to slow the regrowth somewhat - they don’t want me to have another operation for endometriosis for a decade (I’ve had too many already).

Normally, there is the option of using Lupron or Zoladex to actively shrink the growths. This works well for many people. Unfortunately, I’ve already had 3 courses, and must now look after my already lower-than-normal bone density.

My endometriosis will never be fully cured, at least not with the current medication options.

Why can’t endometriosis disappear?

Endometriosis doesn’t go away if you ignore it, even after laparoscopic excision, pregnancy or even menopause (chemical or natural), those cells remain.

Endometriosis and pregnancy

There is a big misconception that having a child is a ‘cure’ for endometriosis. It’s not.

The endometriosis cells remain, dormant during pregnancy due to the nine months of hormonal changes, but still there. During pregnancy, the lining of the uterus is not shed, and therefore the endometriosis growths do not bleed. They gradually shrink throughout the pregnancy and may cause fewer problems after delivery.

Unfortunately, many women with endometriosis have trouble getting pregnant until the endometriosis is removed via surgery.

Endometriosis and menopause

Endometriosis is fed by estrogen, therefore the problem will reduce during and after menopause (when estrogen production slows). If hormone replacement therapy (estrogen) is used, it may feed the endometriosis, even after a hysterectomy. Especially as estrogen is also produced in adipose (fatty) tissue.

Endometriosis lesions feed on estrogen, and continue to grow, albeit slower when less estrogen is available.

Can we avoid estrogen?

We can’t avoid estrogens.

Phytoestrogen naturally occurs in plants and mushrooms, and especially in soy - all healthy parts of our diets.

We are constantly exposed to synthetic xenoestrogens in plastics - water bottles, BPA plastics, plastic wrap and plastic containers.

• Parabens and phthalates in cosmetics and lotions are xenoestrogens.
• Pesticides and herbicides contain xenoestrogens (atrazine, DDT, endosulfan). Zeranol, a growth-stimulating xenoestrogen, is given to livestock (US and Canada).
• The xenoestrogens in the runoff from waste-water treatment and paper wood-pulp bleaching accumulate in fish and wildlife.

More xenoestrogens leach from plastics when you heat them up - make sure you use ceramic or glass containers in the microwave. Avoid sous vide foods (meals cooked slowly in plastic bags in hot water), avoid polystyrene and plastic take away containers, and only store left-overs in containers once they have cooled down.

As we can’t avoid estrogen, the endometriosis cells can never shut down.

Slowing estrogen growth

Taking a progestin pill (Visanne) continuously, or a three-month contraceptive injection (Depo-Provera), or a three-year implant (Implanon), may slow the growth of endometriosis.

More recently, the Mirena IUD, which releases progesterone into the uterus, has also been shown to control endometriosis growths.

Lupron and Zoladex may slow regrowth after laparoscopies have cleared out everything that is visible.

The best option is to catch endometriosis early. Limit the spread of the cells and the damage.

Don’t put off having an operation because “it might just clear up by itself”. It won’t.

My experience

Personally, the Mirena IUD has been a life-saver for me—reducing my constant heavy periods to only 10 days of medium flow, every month.

Visanne — one of the newer medications against endometriosis - has not stopped my endometriosis from growing into the bowel and has had lasting negative and severe side effects including lipedema and breast cancer.

My endomeriosis/adenomyosis operations

Laparoscopies 1-3, 2000-2001 - three initial operations in the public health system in Australia to diagnose and remove the endometriosis. The worst the surgeon had seen. I had to take 3 months of Zoladex to lower the risk of bleeing out, there were so many blood vessels feeding the lesions.

Laparoscopy 4, June 2004 - With a different private surgeon in Australia. The endometriosis has regrown, especially in the Pouch of Douglas and on the left ovary. The surgeon has diagnosed me with clear adenomyosis (confirmed by biopsy) and recommended I have a Mirena IUD inserted.

Laparoscopy 5, September 2008 - Operation #5 and the replacement of Mirena with the private surgeon. The endometriosis has regrown again on the bowel wall and the back of the pelvis.

• 2012 - My abdominal and period pain is increasing, and the adenomyoma cysts are getting bigger on ulstraounds. Doctors are adding Visanne to my medications to try to slow the regrowth.
• 2013 - After all colon imaging and lab tests were negative for known diseases, , the endo surgeon is keeping me on Visanne for another 3 months. If I break through regularly, then she will most likely schedule a laparoscopy, with a bowel surgeon in attendance to do a resection of the part that has regrown endo through it.

Laparoscopy 6, February 2015 - Operation #6 in Germany, this time more endometriosis removal and a total laparoscopic hysterectomy - finally the adenomyosis is gone. Ovaries stay in, as I’m too young, and both removal and/or HRT would equally encourage endometriosis regrowth. Unfortunately, there was no endometriosis to be seen in or on my bowel, so no (visible) explanation for the cyclical bowel bleeding. But at least I didn’t get a bowel resection! Endometriosis cells were found in biopsies taken from “clear” sections of my pelvic walls.

• June 2015 - Visanne must be stopped due to the extreme lymphedema and lipedema it has caused. I am no longer allowed to take hormones, which means the endometriosis will grow with every period.

Laparoscopy 7, May 2023 - Operation #7 in Germany, to remove the ovaries and send me into permanent menopause. Finally some relief from the monthly pain, albeit with all the horrible menopause symptoms. Hopefully, that will be the last laparoscopy I will ever need for endometriosis!

As you can see endometriosis never goes away, even if you constantly try to remove it!