This is not an article intended to be ‘all about me’, but in getting across my point, it needs to be a personal account. I wanted to post this in the hopes that it may get read by someone who is going through what I’ve been through and perhaps because of what they read, they seek proper help faster than I did.

Since I was about 15, I have suffered from endometriosis. I was not diagnosed until I was 28. I’m now 32, I’ve already had two surgeries and in a few months will be having a hysterectomy to stop this disease returning again.


What is Endometriosis?
[link]
“Endometriosis is a condition where tissue similar to the lining of the uterus (the endometrial stroma and glands, which should only be located inside the uterus) is found elsewhere in the body.

Endometriosis lesions can be found anywhere in the pelvic cavity: on the ovaries, the fallopian tubes, and on the pelvic sidewall. Other common sites include the uterosacral ligaments, the cul-de-sac, the Pouch of Douglas, and in the rectal-vaginal septum.

In addition, it can be found in caecarian-section scars, laparoscopy or laparotomy scars, and on the bladder, bowel, intestines, colon, appendix, and rectum.

In rare cases, endometriosis has been found inside the vagina, inside the bladder, on the skin, even in the lung, spine, and brain.

The most common symptom of endometriosis is pelvic pain. The pain often correlates to the menstrual cycle, but a woman with endometriosis may also experience pain that doesn’t correlate to her cycle. For many women, the pain of endometriosis is so severe and debilitating that it impacts their lives in significant ways.

Endometriosis can also cause scar tissue and adhesions to develop that can distort a woman’s internal anatomy. In advanced stages, internal organs may fuse together, causing a condition known as a "frozen pelvis."

It is estimated that 30-40% of women with endometriosis are infertile.”


My story:
As stated above, I have suffered from endometriosis since I was 15. I was not diagnosed for 12 years due to a lack of understanding in the medical profession about what this disease is and how to treat it. Many many times I went to my GP and many many times I was written off as ‘it’s just period pain, all women get it, take some painkillers ,you just need to toughen up’ or worse, called a hypochondriac. I was reliant on doctors to make a diagnosis and believed what they would tell me. I figured it was ‘just my lot in life’ to put up with the pain as best I could.

During high school, my mother would have to come and collect me from school. I was doubled over in pain, very pale and close to fainting. I became reliant on both the pill and painkillers to control what I thought (and what my doctors told me) were just ‘heavy periods’. For 12 years I lived with on again/off again pain that could have been treated with a simple surgery. I became so reliant on painkillers to ease the pain that eventually they stopped working. Normally two tablets would have been enough to ease most types of severe pain, I ended up taking eight at a time and they had no effect whatsoever. I could have been swallowing candy for all the good they did me.

Unfortunately, endometriosis can only be correctly diagnosed by surgery.

I didn’t even find out what endometriosis was until I was 26. Someone at work mentioned it during a conversation and I didn’t know what it was, so I looked on the internet. I found a list of symptoms and a description of the disease, and to my surprise, I was able to ‘tick off’ every single symptom listed.

I went to three different websites and printed off each set of symptoms and went back to my doctor and showed these to him, and informed him ‘this is what I have’. Finally I had a doctor who referred me to a gynaecologist. After scans and tests and discussions, he confirmed that he felt I was right and booked me in for diagnostic surgery. Due to not having medical insurance at the time, the surgery was delayed for two years, I was finally able to have the surgery at the age of 28, after my fiancé obtained medical insurance through his work that agreed to cover pre-existing conditions. After the surgery, the surgeon confirmed mine was a ‘severe case’.


The Laparoscopic Procedure:
Surgeons go into the pelvis to look for and remove the deposits of endometriosis. The procedure is called a laparoscopy and four incisions are made in the pelvic region through which instruments (including a camera) are inserted into the pelvis. The camera allows the surgeon to view the pelvis magnified on a screen and cut away areas of tissue that have deposits of endometriosis present. Bear in mind that they can only cut away what they can see. According to recent research, an area of approximately 44mm around an endometrial deposit is ‘invisible’ endometriosis, ie not visible to the naked eye.



Back to my story:
Two months after the surgery and the pain returns, very mild at first, but enough to give me a fright. I take a couple of aspirin and the pain goes. No problem, I can cope with that. Four months after the surgery and I’m in at the doctors having painkiller injections because the six tablets I took two hours before were having no effect. I was curled up on our couch in the foetal position, almost passing out from the pain.

The following week I had an IUCD fitted (Inter-Uterine Contraceptive Device). Commonly these are used as birth control, however they work by reducing the amount of blood/tissue formed during a period and in some cases periods will stop altogether.

The IUCD helped control the pain and reduced my periods, but unfortunately it didn’t stop them altogether. Two years passes since the first surgery, and having the IUCD fitted, sitting at home one night and I get a pain in my lower stomach so intense that it literally takes my breath away and leaves me gasping. It lasts for only 15 minutes, but is severe enough that I know that the endometriosis is back.

I ring the surgeon the next day and make an appointment, and within a month I’m booked in for another surgery. The endometriosis is removed again, and the IUCD is taken out and replaced for a new one.

A year or two down the track and everything is seemingly going well. Except I’m suffering from depression, and weight gain. I’m not talking a few inches around my middle… I’m talking an increase of 4 dress sizes. I had joined a gym, but still was gaining weight. It wasn’t until running across a stand for the Endometriosis Foundation at a women’s expo and talking to the lady there, that she told me that a lot of women with the IUCD fitted will suffer bad depression and weight gain. It was like a light going on in my head – I had put it down to anything BUT the IUCD. I made the decision there and then to have it removed and within two weeks noticed a dramatic improvement in both my attitude and weight. However with the removal of the IUCD comes the return of the endometriosis.

I’m now 32 and in a few months will be having a full hysterectomy. We have had to go through counseling to make sure we are making an ‘informed’ decision, since this means I will never have children. After putting up with this illness for literally half of my life, I simply want my life back.


Why am I posting this article?

This disease is more common that I was lead to believe by the 12 different GP’s I consulted with. In the years since I found out what this disease was, I have met so many women who have gone through exactly what I have gone through – unsympathetic doctors, misdiagnosis, delayed treatment. Yet many of them are reluctant to talk about it because they’re too embarrassed.

Please, if you suffer from these symptoms [link] and it is interfering with your capacity to live life, if you require painkillers just to ‘get through’ your period, please seek help from a gynaecologist or surgeon experienced with this disease.

I understand this article will probably generate a lot of ’s and “I’m so sorry for you” style comments. I do appreciate that people will sympathise, and I do appreciate that people care. However, my reason still remains, if you know of anyone, who may be affected by this disease, please point them here to read this or talk to them about this disease. So many women are reluctant to talk about problems they may be having with their cycles, be it pain or irregularity or something else. Please get past it and seek help, even if it’s just for your own piece of mind.