Lets talk about Endometriosis – no one else is

I ask myself why there is so much pain and shame associated with being in  a female body.

Whether it begins  with her first inappropriate non consensual touch , usually by a man,  or her first painful consensual penetration with a man , her pain is ignored, its expected,  and she quickly learns to suck it up. This is the beginning of the narrative of pain for women. And where are the men ?  Marching the streets (to much public acclaim – WTF??!!) in solidarity of  women , whilst women lie at home alone, writhing in emotional and/or physical pain.

I  make no excuses   for threading gender into this discussion on  endometriosis. Perhaps because  much of the initial  nightmare of this disease begins with a woman not being  believed .The average time taken for diagnosis is eight to 10 years. She has had to fight for many years to get that diagnosis . Why do women have to fight to be believed ??

Let’s trace this silent disease to its roots. A young girl  experiences her first  often silent bleed into womanhood, with the unexpectedness  of the accompanying menstrual pain. She gasps with  this pain , and no one pays attention to her. The unacceptable  lack of sexuality education at home especially, that would inform and prepare her for a beautiful initiation into  menstruation, is missing. Perhaps  there is something to this   “pain gap” between women and men =  A 2001 study, “The Girl Who Cried Pain,” asserts that men are more likely to be given medication when they report pain to their doctors, while women are more likely to be given sedatives. Women are also “more likely to have their pain reports discounted as ’emotional’ or ‘psychogenic’ and, therefore, ‘not real.'”

Menstrual pain is accepted as being painful, just what every woman experiences , so when a woman complains of excrutiating menstrual pain its not investigated further , rather medicated and dismissed as “normal.” Women shamefully slink away thinking this is yet another body burden to bear. Does this response reflect out ongoing discomfort talking about bloody juiciness of women’s bodies , namely their menstruation , as well as their  fertility/infertility.

The time comes , however, when  the pain is so disabling that she is  unable to live in her life , keep a job, stay in College or have sexual penetration as it is just too painful. Finally she is given the diagnosis of endometriosis. And a new medicalised  life begins . Medications, surgeries, invasive procedures that provide little to no relief, threaten to dominate her life. Plans need to be changed at the last minute because the pain dominates her life. Standing for lengths of time cannot happen so her job is compromised. And sex is mostly off the table.

.Endometriosis is a painful, chronic disease that affects one in 10 women of reproductive age worldwide, according to the World Endometriosis Society.  That translates to about 176 million women worldwide. Most women with endometriosis first experience menstrual symptoms during adolescence, but the condition manifests most commonly in women who are in their 30s and 40s.

Researchers still do not know what causes the disease and there is no cure. The condition occurs when tissue similar to the endometrium, the lining of a woman’s uterus, appears in other areas of the body. It’s most commonly found in the abdomen, around the reproductive organs, and in the pelvic cavity.

Outside the uterus, this tissue continues to behave like womb lining, thickening, breaking down, and bleeding during each menstrual cycle. But the tissue has no way of escaping the body. Instead, it develops into growths, often described as lesions, which cause the disease’s most common symptoms: extreme pelvic pain, heavy menstrual bleeding, and infertility. Over time, the disease can progress as inflammation causes scar tissue and adhesions to build up around the lesions, “webbing” organs and muscles together.

Watch this video  

It will give you a great overview of endometriosis

Symptoms include :

  • Painful periods (dysmenorrhea). Pelvic pain and cramping may begin before your period and extend several days into your period. You may also have lower back and abdominal pain.
  • Pain with intercourse. Pain during or after sex is common with endometriosis.
  • Pain with bowel movements or urination. You’re most likely to experience these symptoms during your period.
  • Excessive bleeding. You may experience occasional heavy periods  or bleeding between periods
  • Infertility. Endometriosis is first diagnosed in some women who are seeking treatment for infertility.
  • Other symptoms. You may also experience fatigue, diarrhea, constipation, bloating or nausea, especially during menstrual periods.
  • Painful sex
  • It shares symptoms with other conditions. For example, more then 60 percent of women who have endometriosis also have Irritable Bowel Syndrome (IBS) which can cause both constipation and chronic diarrhea.
  • There is no known cause.  Studies show  a genetic component,  a family history ,as well as  some fetuses are  born with it and  commonly , retrograde menstruation, as primary causes.
 There is no known cure for endometriosis . The disease is managed in a variety of different ways. it may begin with first line of therapy which is   use of birth control pills, and other hormones to mimic menopause.  Out of despair to relieve her of pain, , hysterectomy  may be performed .Only to discover after the fact that the  lesions are elsewhere and the pain may well  continue. The “gold standard” treatment for endometriosis is the most invasive: laparoscopic excision surgery.And even then there is no guarantee that this is a life time treatment.
Imagine having sex with this kind pain. Well, a lot of women do not.. A study published in Reproductive Services , 2017, shows that this problem often leads to sexual dysfunctions, including low sexual desire and impaired lubrication, arousal, and orgasm.In a study of 125 women with endometriosis and pain during sexual intercourse lasting for at least six months, sexual dysfunctions and sexual distress were found in 32% and 78% of subjects, respectively. Sexual dysfunctions were associated with not only extreme pain , but  guilt toward a partner and understandably , a decreased sense of femininity.

Sometimes reluctance to engage in sexual intimacy can occur on both sides, as partners may be fearful of hurting their partner or worried that raising the issue will be upsetting.

Between chronic pain, painful sex, taking medication and hormonal therapies, undergoing surgery and dealing with a variety of emotional issues, it is little wonder that sexual desire is affected.

I ask :

  • What has been your experience of reporting chronic menstrual pain to a health care provider?
  • Have you been believed or told this is “normal” pain that all women experience?
  • Have you been able to tell a partner? If so, how did that go?
  • How has it affected your sexuality?
  • How has your endometriosis been managed?
  • How has this affected your life globally?
  • What would you like your partner/family/friends to know about endometriosis?

Sexual Suggestions for Couples with endometriosis :

  1. Accept that sexual interest is not top of your agenda

Rather than shame and silence , accept that you are suffering from a  painful and sometime debilitating  illness. Once you accept this, you will more easily take sexual pressure off of yourself. Speaking to a partner about endometriosis creates partnership and support. Intimacy is a natural result of unity.

2. Track your monthly cycle.

For some you this may sound laughable as your pain may constant. For others your pain maybe contained during times of ovulation an menstruation . I say notice the times when you are without pain or the pain is low enough to motivate you to want intimacy of some form or another.

3.  Dry vaginas require extra wetness.

Pain , or the anticipation of sexual pain, does not incline one to arousal which results in loss of lubrication. I recommend the use of Liquid Silk, a vaginal moisturiser, inserted directly into the vagina , for added comfort . A silicone based lube, such as Pjur, will feel silky and luxuriously comforting – and arousing – for masturbation , either alone or with a partner.

4. Be sexually creative .

Forget about penetration as being the primary sexual activity. Let your vagina have a rest if it rebels against the idea of being penetrated. Mutual caressing , mutual masturbation, or oral sex , even anal sex  (with anal lube and condom of course) may be wonderful. These may just be  a few of your favourite things. I am sure you can imagine your own sexual activities. If you’re stuck , watch porn to get ideas. And sex toys may be your best go to place.

5. Penetration as choice activity.

Lots of Liquid Silk, find a portion that works for you and your partner. This requires you to talk and guide your partner,  in the moment  The missionary position tends to be the most painful for women with endometriosis because of how your uterus is tilted and the depth of penetration. I am not going to be dictatorial about your sexual positions . You decide. You know where your pain is.

6. Prepare for possible post coital bleeding.

Postcoital bleeding can happen because penetration causes the uterine tissue to become irritated and tender. The experience can be frustrating, even embarrassing. Especially if you have not yet told a partner about your endometriosis . Keep towels around and wet wipes.

7. Relationship stress.

Voice your concerns about possible rejections. Discuss things such  as fear of intercourse, guilt about letting your partner down,  And, of course, your need to love and be loved as a person who has a chronic disease.

8. Fertility

Discuss fertility without shame or blame. Fertility may well be compromised by endometriosis. Prepare for it rather than avoid this difficult painful conversation .

For further conversations about endometriosis , contact me.