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Will Endometriosis Ever Go Away? What I Found Out

Kymberly has managed many chronic illnesses for 25+ years, including sciatica, costochondritis, fibromyalgia, PTSD, endometriosis, and more.

Does Endometriosis Go Away?

In a single word, no.

Endometriosis doesn't go away—and if it is ignored it will typically continue to grow.

Unfortunately, too many doctors and parents claim that period pain is "normal." Heavy or irregular bleeding is often ignored.

But endometriosis can cause serious problems, including:

  • chronic pain
  • infertility
  • irreversible damage to the organs inside the pelvis
Endometriosis, large cysts, lesions and adhesions covering the inner surfaces of my abdomen.

Endometriosis, large cysts, lesions and adhesions covering the inner surfaces of my abdomen.

What is endometriosis?

Normally, endometrial cells grow in the endometrium - the lining inside the uterus which, when healthy, thickens and sheds in a monthly cycle. Endometriosis occurs when endometrial cells grow where they shouldn't - in places other than the uterus lining.[1,2,4]

Endometriosis most commonly forms in the abdomen, the pelvic cavity, on the outside surface of the uterus, the walls of the abdomen, on the walls of the bladder and bowel, on the fallopian tubes and outer surface of the ovaries, and on any muscles and tendons that hold the organs in place.

It forms lesions and "chocolate" cysts (because the dark blood is a chocolate color). As the lesions grow over time, the endometriosis penetrates deeper into the abdominal cavity and tissue.

Each month, these endometriosis growths bleed - the blood goes into the abdominal cavity causing serious cramping, scars and adhesions, sticking organs together.

In long-term serious cases, the endometriosis can penetrate the walls of the organs (bowel, bladder, etc.), requiring major surgery to remove the damaged sections and repair the organs.

Stages of endometriosis

StageDescription

Stage 1 (minimal)

A few surface lesions and weak adhesions.

Stage 2 (mild)

Stage 1 lesions and adhesions, plus some deeper lesions.

Stage 3 (moderate)

Stage 2 plus more strong adhesions and endometriosis on the ovaries.

Stage 4 (severe)

Large areas covered with deep endometriosis, many strong adhesions.

(Stage 5 extreme)

Suggested by my surgeon - other organs involved, adenomyosis, surfaces covered in diffuse and deep endometriosis.

Endometriosis symptoms

The symptoms of endometriosis may be chronic, throughout the month, or occur at specific times during the menstrual cycle.

Most women who suffer endometriosis have one or more of the following symptoms:

  • debilitating menstrual cramps, every month
  • chronic pain throughout the monthly cycle (pelvis, abdomen and back)
  • bowel and intestinal pain and symptoms, similar to IBS
  • painful or urgent urination, similar to a urinary tract or bladder infection
  • heavy, long or irregular periods
  • pain or spotting during ovulation
  • large blood clots during periods
  • irregular spotting throughout the menstrual cycle
  • pain during sex

Who gets endometriosis?

It is estimated that up to 10% of women, or more, suffer endometriosis. [2,4]

Doctors don't know why some women get endometriosis, and others don't - the cause of endometriosis is currently unknown.

However, there is some evidence that endometriosis may be hereditary - the risk of a person developing endometriosis is higher if their mother had endometriosis.[1]

Some studies have recently indicated that molecules from plastic, that break down in heat, can mimic estrogen, and may contribute to hormone problems, such as endometriosis.[6]

Luckily, I have a fantastic plastic-free kettle now, but I wonder how much my all-plastic kettle has contributed to the severe endo.

How is endometriosis diagnosed?

Endometriosis can only be diagnosed with 100% certainty, via laparoscopy using a camera inserted into the abdomen via small cuts, and a biopsy of tissue samples.[1]

Although improvements have been made in ultrasound and MRIs, they are unreliable.[2]

Unfortunately, my extreme endometriosis has never appeared on any non-surgical test.

After 3 months of menopause, it was safe to operate. You can see the huge number of lesions and chocolate cysts more clearly with a reduced blood supply.

After 3 months of menopause, it was safe to operate. You can see the huge number of lesions and chocolate cysts more clearly with a reduced blood supply.

Endometriosis hell - when doctors ignored my pain

I had painful, heavy periods from the moment they started. I was told over and over again by doctors and family that the pain was either 'normal', or 'all in my head', and refused to investigate.

I was told to ignore it.

At age 15, the monthly pain was so debilitating that doctors decided to 'treat' me with the contraceptive pill. At age 19-21 I bled and spotted constantly for two years, breaking through all the medications that various gynecologists wanted me to try.

No doctor or specialist suggested endometriosis until I was 24, and a diagnostic laparoscopy was ordered.

The next two operations showed I had endometriosis, the worst that the surgeons had seen. A new stage of endometriosis was suggested, because the lesions, cysts, adhesions and organ involvement was so severe.

The surgeons could not remove the growths because the endometrial cells were fed by a huge array of blood vessels.

Chemical menopause

To shrink the blood supply, making it safe to remove the endometrial growths that covered all the surfaces of my abdomen, I was put into a chemically induced menopause, with a drug normally used to treat prostate cancer. The side effects were almost unbearable.

A third operation removed most of the endometriosis. After a few months of recovery, my pain pattern had changed (the pain was mostly at the end of menstruation), but not improved.

I could not believe it when these top endometriosis surgeons told me the pain was "in my head"—imaginary pain.

Adenomyosis of my uterus - it is spongy, enlarged and not smooth. Diagnosed via biopsy.

Adenomyosis of my uterus - it is spongy, enlarged and not smooth. Diagnosed via biopsy.

Severe consequences for ignoring endometriosis

A new surgeon and another operation discovered extensive diffuse adenomyosis—the rogue endometrial cells had buried themselves deep into the uterus muscle wall.

Such adenomyosis is only treatable with a hysterectomy, but I was only 26, far too young.

In addition to severe pain, adenomyosis causes infertility, high rates of miscarriage and birth defects due to the damaged muscle and an impaired blood supply.

Had doctors discovered and removed the endometriosis before it got so extreme, the adenomyosis would not have developed.

I had to cope with chronic, severe pain and undergo two more endometriosis-removal operations before I was allowed to have a hysterectomy at age 38. They still wouldn't take my ovaries out, because I am too young.

I am now unable to have children, because my period pain was ignored by doctors.

Does endometriosis ever go away?

During pregnancy, the lining of the uterus is not shed, 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.[2]

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.

Taking a progestin pill (Visanne) continuously, or a 3 month contraceptive injection (Depo-Provera), or a 3 year implant (Implanon), may slow the growth of endometriosis.

More recently, the Mirena IUD, which releases progestorone into the uterus, has also been shown to control endometriosis growths. All of these methods may have side effects.

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

Endometriosis: true or false

For each question, choose the best answer. The answer key is below.

  1. Men can also get endometriosis.
    • True
    • False
  2. Endometriosis can only grow in the abdominal cavity.
    • True
    • False
  3. Even if you have endometriosis, you can have a pain-free period.
    • True
    • False
  4. Endometriosis can continue to grow after menopause.
    • True
    • False
  5. Oral contraceptives reduce endometriosis pain.
    • True
    • False
  6. Doctors know why endometriosis forms.
    • True
    • False
  7. Thomas Cullen first described endometriosis in 1920.
    • True
    • False
  8. Common gene have been found in endometriosis patients, that are different to healthy people.
    • True
    • False

Answer Key

  1. True
  2. False
  3. True
  4. True
  5. True
  6. True
  7. True
  8. True
Visanne - one of the newer medications against endometriosis. Has not stopped my endometriosis from growing into the bowel.

Visanne - one of the newer medications against endometriosis. Has not stopped my endometriosis from growing into the bowel.

March is Endometriosis Awareness month, where many events and conferences are held worldwide.

Update: October 2012

My abdominal and period pain is increasing, and the adenomyoma cysts are getting bigger. Doctors are adding Visanne to my medications, to try to slow or halt the adenomyosis growth. It's still too early to tell how well, or even if, this will work.

Update: November 2012

Two surgeons are now concerned that the endometriosis has returned, this time it's interfering with my digestive tract - the sigmoid colon and rectum. I'm currently undergoing a barrage of tests to get a diagnosis for my worsening digestion symptoms.

Update: February 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.

Update: April 2013

With cyclical breakthrough bleeding from the bowel, the head surgeon, bowel specialist and head gynocologist at the university hospital all agree - the endometriosis has regrown, and this time through the bowel wall. They've given me two options - hysterectomy and bowel resection now, or risk losing a significant portion of my bowel as the endo continues to grow.

Update: February 2015

Operation number 6, 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!

Unfortunately, endometriosis cells were found in biopsies taken from "clear" sections of my pelvic walls. I have to stay on Visanne until I go into menopause.

Endometriosis never goes away, even if you don't ignore it!

References

  1. Recognising, understanding and managing endometriosis, I.S. Fraser, et.al., Journal of Human Reproductive Science, July-December 2008, 1(2):56–64.
  2. Endometriosis and infertility, C. Bulletti, et.al., Journal of Assisted Reproduction and Genetics, August 2010, 27(8):441–447.
  3. Appearance of abdominal wall endometriosis on MR imaging, M.P.H. Busard, et.al., European Radiology, May 2010, 20(5): 1267–1276.
  4. The Diagnosis and Treatment of Deep Infiltrating Endometriosis, H. Gülden, et.al., Deutsches Ärzteblatt International, June 2010, 107(25): 446–456.
  5. Endometriosis, a modern syndrome, I. Brosens and G. Benagiano, The Indian Journal of Medical Research, June 2011, 133(6):581–593.
  6. Bisphenol A: An endocrine disruptor with widespread exposure and multiple effects, B. Rubin, Journal of steroid biochemistry and molecular biology, Oct 2011;127(1-2):27-34.

If you have endometriosis

What's your experience with endometriosis?

Did your doctor's ignore your pain too?

Share your stories below!

This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.

Comments

Victoria Bishop. on January 19, 2020:

I had very painful and heavy menstruation cycles from the beginning...age 12. My family doctor was wonderful and gave me a prescription to help me sleep and get some relief. From the 7th grade on, I missed a day or two a month of classes due to my period issues.

My pelvis and back pain became such a problem that my doctor had me sit out gym classes for grades 10-12 No one had any idea about endometriosis at the time...or mentioned it as a concern.

I remember the pain of passing large clots of blood during my periods the constant fear that I would have an embarrassing accident in school or church. In those days.. the late 50s and early 60s, those problems were hush-hush other than in the doctor's office

At 26 I had endoscopic surgery to determine whether I had endometriosis or not. Yes indeed, I did. I was stage 2 or 3, I don't remember. However, it was bad, but not severe. I had surgery to remove all the growths possible and later had ovarian fibroids removed. Then I had another surgery that showed even more cell attachments to my intestine and abdomen wall.

My nightmare, beyond the pain, was spending two years on extensive daily doses of birth control medicine. That was before the new drugs mentioned here. They caused weight gain, fluid retention and vicious back pain. And, years and years of severe constipation due to the growths on my intestine. This problem persists fifty years later.

After my menopause at age fifty, I had some relief from the pelvic pain but I continue to have lots of pain in my lower abdomen and lower back. This is less troublesome when my bowels are empty.

There is no consolation in being in only 10% of women with this nightmare. That is no honor. However, you ladies do have doctors with more knowledge, better surgical options and better drugs to treat the endo.

I am now seventy-five and my GYN is considering another laparoscopic check for endo damage that might be eased.

Best wishes to all.

Keli Kirby on November 19, 2017:

I had endometriosis surgery over 10 years ago to remove it from my abdominal wall. It's starting to hurt again in the same place. I thought once surgery was done it would be gone forever. I guess I was wrong

Mary harper on October 12, 2017:

I would like to know,if the pain of endo continues into you 60s,I went into hospital when I was 50 for a hysterectomy,after suffering agonising periods all my life,they got much worse in my 40s,never once was I told that I may have endometriosis,I had camera precedures,for several years to see what was going on,still never told that I may have endometriosis ,when the surgeon opened me up,he was amazed at what he found,not only could he not give me a hysterectomy,he could not take any of the endo away as it was stuck to my back bone,bowel and bladder.he said he had never seen anything like it,in all the years he had been a surgeon,he said afterwards that maybe if I have had a camera through my belly button instead of my vagina,they may have diagnosed it at some point sooner.i still have lots of pain in my pelvis and my bowel,I would like to know if anyone else with severe endo,still has debilitating pain in their 60s.

Kymberly Fergusson (author) from Germany on December 16, 2016:

Hi Pauline,

I've been taken off Visanne for 3 months to see if it has any effect on my weight and water-retention (edema). My weight hasn't changed, but I've gone down two dress sizes (enough that my leg compression for lymphedema no longer fits). The only side effect other than edema, was cystic acne, but that settled down after about 9 months (I was on it for 1.5 years). I haven't had any other side effect, thankfully.

Having been off Visanne for a month now, the daily endometriosis pain in my bowel and monthly bleeding has returned with a vengeance. So painful.

I haven't got back in touch with the surgeons yet to see if I should stay on Visanne to control the regrowth and the bowel damage, or if the edema is the 'worse' of the two problems. :-\

Good luck!

Pauline on December 14, 2016:

Hi dear , I, starting on visanne soon . Is there any side effect with visanne like weight gain ?

Kymberly Fergusson (author) from Germany on October 09, 2013:

Hi Tracy - I'm sorry you have to go through this too! It always astounds me how many doctors say "It's normal"!

My endo/adeno never showed on imaging tests either - only during surgery. The know from clear symptoms that my bowel is involved, but they have no idea how severely. And the surgeons here are very conservative - they don't want to operate often, or early for an oophorectomy (ovaries out).

Your story of pelvic pressure and lower back pain seems to be common when the bowel is involved, and when the ovaries are stuck down. And I am not sure there is a 'norm' for endo these days -- too many people have it at all stages of life!

I'm glad they have decided to go for a solution for you that will have the best chance of relief!

Zoladex is a tough medication, the side effects can be very bad (or none at all for some people). It will most likely give you relief from pain, and definitely will shrink the blood supply to the endometriosis, making it safer to operate. It will also give you a taste of what it will be like after your next operation, as you will be in a mini-menopause!

I found a good support network (any combination of friends, family, pain support groups, doctor, psych), was really helpful when on Zoladex and Lupron. I think if I couldn't have complained about the side effects, and didn't have people who knew why I was moody and snappy around me, I may not have gotten through the whole treatment.

Cold, wet face washers were a life saver for hot flushes for me - especially at night on my feet.

It would be great if you could stop by here again, and give us your tips, when you are through the Zoladex, and after the surgery. I have the same surgery to look forward to in just under 10 years, with a probable bowel resection at the same time. I'd love to know how your surgery went, and what tips you have for recovery.

Best of luck!

Kym

Tracy on October 02, 2013:

Thankyou ladies for your stories it has shed so much light on what I'm going through... I didn't realize a support system for endometriosis even existed. I have always suffered from horrible periods and clotting since i started menstrating... Over the years, drs just said it was normal for me... june 2013 i went to my dr because even after my period i had horrific pelvic pressure and lower back pain, and A month ago I underwent surgery for an ovarian mass/fibroid. The ct scan and pelvic ultra sound showed my bowels, kidneys weren't affected. However, when I was opened up I had stage 4 endometriosis that had attached to my bowel. Because bowel surgery wasn't planned I was sewn back up, now I'm on Zoladex and in 5 months will undergo another surgery. It will be a full hysterectomy as my ovaries, Fallopian tubes and uterus are fused together. I didn't match the norm for having endometriosis... im 42,.have 4 kids, 5 pregnancies and have not experienced painful intercourse... Any advice, words of wisdom would be much appreciated.

Kymberly Fergusson (author) from Germany on September 14, 2012:

Leslie - thank you! I know so many people with endo, adeno, fibroids or PCOS. It seems that more than half of my friends suffer under one or more of these diseases. And all have horror stories of doctors telling them that period pain is 'normal' and to put up with it. I also hope this can raise awareness of endo and other related problems.

lesliebyars on September 08, 2012:

I enjoyed reading this hub. Endometreosis affects more people than we care to think about. I have it but, not to the extreme that you do. I hope this helps someone else who may not know about endometreosis.

Kymberly Fergusson (author) from Germany on August 29, 2012:

JCielo - I hope the hospital quickly finds the source of her pain. Not know why you're in pain is much harder to bear than when you know the reason. Best of luck and strength to her and your family!

Kymberly Fergusson (author) from Germany on August 29, 2012:

Ghaelach - When it's not caught and treated early, endo certainly is a dreadful disease. Thanks for your kind comments!

Kymberly Fergusson (author) from Germany on August 29, 2012:

Kristyleann - PCOS is nasty, and the pain when one of those cysts ruptures is so sharp! Unfortunately, you can have both endo and PCOS at the same time, so I'm glad you didn't develop endo in addition! Which birth control do you use that controls PCOS? I know that low estrogen medication should be used for endo sufferers, but I'm not sure what is recommended for PCOS.

Glen Nunes from Cape Cod, Massachusetts on August 28, 2012:

What a terrible story. Thank you for sharing it - maybe by sharing your experiences you'll encourage someone else to advocate for themselves a little harder with their doctor.

JCielo from England on August 27, 2012:

My son's partner is in hospital right now underging tests. The consultant told her last night that she thinks it's Endometriosis.

The excruciating pain she has been going through is frightening. The only thing that helped in hospital was morphine.

Wonderful hub. Voted up, interesting and shared.

Ghaelach on August 27, 2012:

Hi Kimberly.

Hell! this is an awfull medical condition.

With my own problems, I say there's always someone worse off than you. Now I think I've met that someone.

As Kristy mentioned when are the Doctors going to start listening to the patient and not always going by the book.

Take care Kimberly.

LOL Ghaelach

Kristy LeAnn from Princeton, WV on August 27, 2012:

My mom has endometriosis and I remember how much she suffered when I was a kid until she finally had a hysterectomy. I am fortunate because I didn't get it, but I got another condition (nowhere near as bad though) called polycystic ovarian syndrome. My body makes too much male hormone which screws up all kinds of stuff in the body. Mostly it just causes annoying symptoms (unwanted hair growth, acne, weight gain) but it also causes you to get cysts on your ovaries pretty often and when they rupture (depending on how bad the cyst is) it can be "painful" all the way to "oh my god I am going to die take me to the ER" painful...but fortunately for me I can take birth control and it prevents most of my cysts from occurring. I'm sorry you've been through so much. When are doctors going to learn that pain isn't just in someone's head? It's a very real thing that ruins a lot of lives until it can be treated.

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