Endometriosis: not just about fertility

According to this article, infertility among patients with endometriosis is only slightly higher than in the general population. The author has focused on the negative impacts of unplanned pregnancies that occur as a result of the scare mongering around endometriosis.

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So what are the consequences for women of telling them that a diagnosis of endometriosis is a sentence for infertility? To name just a few: stress and worry, pressure to alter one’s life plans, and unintended pregnancy. It is the latter that I became most concerned about after being approached by clinical social worker Brooke Calo at an Australian public health conference in 2014.

I had just presented my research on women’s experiences of healthcare for endometriosis and fertility – including that their doctors appeared to be more concerned with their fertility than things like pain relief and quality of life – when Brooke shared with me her experience of counselling women with endometriosis and an unplanned pregnancy.

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Women’s stories like these and Brooke’s clinical experience prompted my colleagues and me to examine the fertility experiences of women with endometriosis in our national Fertility Management in Contemporary Australia Survey, recently published in the European Journal of Contraception and Reproductive Health Care.

Among the 1,543 women surveyed, we found that the 7% of women with endometriosis were just as likely to have experienced unintended pregnancy (and an abortion) as those who did not have the condition. They were also just as likely to have ever been pregnant and to have given birth.

About time someone focused on the other impacts other than infertility.

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yurble
About time someone focused on the other impacts other than infertility.

Agreed! I wish it were surprising that fertility has been valued over women's quality of life....

Topic detour: If you are really CF and opposed to accidental pregnancy, you won't believe a doctor when they advise you could be infertile. I had severe endo most of my adult life but I insisted on a tubal ligation. I wanted a doctor to burn every part of those tubes.

"About time someone focused on the other impacts other than infertility."

Back to topic: If pronatalism only fucked up things culturally and socially, it would be one thing, but it's ruining the planet and fucking with people's medical treatment.

I happened to be born with two reproductive diseases, PCOS and endometriosis. It makes me FURIOUS how many doctors told me to come back "when" I was ready to get knocked up, then they would bother to treat me. They always asked me, how long have you been trying to get pregnant, as if that was the only consideration in a woman's life.

Doctors go where the money is and now that IVF is required in to be covered by insurance in some states, doctors are going to IVF and not treating women. Now the emphasis is on "preserving fertility" for the "pre-pregnant."

It should not matter whether you plan to use your uterus or not. Endometriosis is serious disease--more research needs to be done. Many doctors believe it's an autoimmune disease although that official determination has not been made. I suffered for a very long time. Every couple of years I would have a D&C and laproscopy to scrape/burn it off my insides. By the time I was in my early 40's I had at least SEVEN procedures and it was all over my abdomen, including my intestines, bladder and rectum.

I would feel better for a while after the procedures, but then it would grow again. I never could tolerate the Pill to suppress ovulation.

I did one round of Lupron Depot and I felt fantastic, but you should only do it for a six month period. My doctor wanted me to do it again because I was nullipara, but I found another doctor who gave me that much needed total hysterectomy.

It was disgusting I had to suffer like that and wait so long for proper medical treatment. Had it not been a reproductive organ, it would have and should have been gone before I was 25.

Hell the fuck no it's not just about infertility! 1 in 10 women has endo, and PAIN is the most common symptom. Period pain, pain during sex/urination/defecation/ovulation, etc.

Mine started as horrendous cramps at age 15 & got worse & more frequent around 30. Started feeling like broken glass in my va-jay-jay from ovulation through period time. Actual period pain was so bad I'd hyperventilate. Luckily, birth control pills greatly reduce the pain for me, but they have other side effects & I'm approaching an age when they're trying to ween me off them due to my migraines & resulting stroke risk. Don't know what I'll do when that happens. I'd just as soon die as try something like Lupron or Depo-Provera. Anything that's a shot & can't be reversed if I react terribly--which happens a lot with my history of mental illness--would be a death sentence. Not to mention my lack of health insurance that makes surgery impossible for now.

So yeah. Endo is a real nightmare. Can't imagine if 1 in 10 men had to deal with a similar form of pain (and infertility) in their reproductive organs. Scientists would probably know not only the cause but have found a prevention & cure long ago.

It's unfortunate, but true. Doctors will sooner save the baby oven than the woman's life or sanity because if they rip out that uterus, that means the potential for future cash flow into their pockets will go directly to ZERO for pre-natal care, fertility treatments, delivery and then pediatrician visits. Can't be having that! Who gives a fuck if the lady is in horrible pain, bleeds like a stuck pig, and has to take sick time off work every month because of reproductive illness, gotta keep the plumbing intact on the off chance she wants kids one day instead of relief from her symptoms. And I'm sure they don't want to risk possible lawsuits if the woman wants the broken parts removed knowing it will sterilize her, only to come back blaming the doctor for taking away her babymaking ability and suing.

So if any problem causes infertility as a symptom - especially for women - that's the main focus of the problem like being unable to spawn is the worst thing in the world. Way to continue drilling it into everyone's heads that the only thing that matters about a woman is her ability to breed. This also means that idiot doctors will focus on treating that symptom instead of treating the actual problem.

I got to the point where I was wearing Depends to bed and sleeping on a towel because regular products wouldn't contain it. I remember one time when I was traveling and I started having a "blowout." I was at an airport, dragging my suitcase behind me, thank Todd, and I made it into a bathroom stall where I proceeded to bleed through my clothes, on the floor and even on my suitcase. I was able to clean myself and the surrounding area up but it was mortifying. Thankfully I had a change of clothes in my suitcase.

It was a pivotal moment for me. I was like I HAVE INSURANCE GODAMNIT AND AS GOD IS MY WITNESS I'M GOING TO FIND SOMEONE TO CUT THAT SHIT OUT BECAUSE THIS SHIT IS RIDICULOUS. I went to my mother's oncologist and he agreed to do it for me. I ended up going to someone who studied under him. The FIRST DAY I went to see her was her first day back from Moo-ternity leave. And yet, she said, "it sounds like you need a hysterectomy." I love her and she's still my doctor a dozen years later because even though she's a parent herself, she can separate being a doctor from being a Moomy. She is completely sensible and has never given me any judgement--what a find.

"Can't imagine if 1 in 10 men had to deal with a similar form of pain (and infertility) in their reproductive organs. Scientists would probably know not only the cause but have found a prevention & cure long ago."

QFT!

I had the same bleeding/flooding problems near menopause due to uterine fibroids I'd had for years. My doctors NEVER suggested that it might be worse because of peri-menopause. A coworker saw me running to the bathroom and clued me in to the term. I even , on the other hand from the former posters, spent decades fighting a hysterectomy. In my case it was always "but you don't want kids, so why do you NEED those organs?" Well, I know many disagree, but I feel if your life or pain level, or etc is not affected, you want to keep the organs you came with. (And sometimes, I DO mean "came"! hahaha) I even had to search up a special doctor to do a myomectomy (ANOTHER procedure a coworker had to suggest to me--no mention of the possibility from any drs! I had read some "exposes" and a book or two that suggested there can easily be side effects such as sexual dysfunction after hysto. Also that the surgery is 3-4 times more often done in a for-profit system like ours, as compared with first world countries with medical care subsidized by the govt. With most women of my age it seems to be "when did you have your hysto. ?" not "did you"? The doctor who diagnosed my fibroids referred to them as "uterine tumors', despite the fact that fibroids are almost never cancerous. Even though I was 29 he wanted to yank it all out .