The Endometriosis Worldwide March, 13 March 2014

Today, in over 53 cities, will be the first ever worldwide march for Endometriosis. One in eight women has endometriosis. Chances are you know someone who has it. I have it. The symptoms range from mild to severe. Many women spend years waiting for a diagnosis. It took 21 years before I finally had a laparoscopy (a keyhole surgery, which is the only way that Endometriosis can be diagnosed). 

I am lucky in that Endometriosis did not reduce my fertility. But it did leave me in severe pain two days every month. Try taking care of two children when you are in bed, doubled over, and sobbing with pain. But it could have been worse. The exact cause of Endometriosis is not known, and there is no cure. This of course makes treating Endo difficult. On the 2nd of December 2013, I had a laparoscopy and two Mirena Coils inserted (blog post here). Though I struggled with pain for the first month afterwards, I have been relatively pain-free since January 2014.

Yellow Ribbon Clip Art

There are many women out there, still waiting for a diagnosis. And many, who though they have a diagnosis, are not receiving an effective treatment. Last week was Endometriosis Awareness Week. There was a segment on ‘Lorraine‘ (only UK viewers can watch this clip) and ‘This Morning’ but I did not see very much coverage. So today while thousands, and hopefully millions, of women march, I hope that Endometriosis gains more attention. I hope this allows for more research, better diagnosing and more effective treatment options. Because how are we going to get rid of this thing, if most people think it is simply a bad period?

If you would like to find out more about Endometriosis, have a look at Endometriosis UK or Endometriosis.Org.

Laparoscopy Survival Guide

When the consultant suggested a Laparoscopy, he gave me a leaflet explaining what it was and that the recovery time was 1-2 days. And when the procedure was booked, I received another paper that told me not to eat six hours before the surgery and not to wear jewellery or make-up. 

But I feel like there was a lot I wasn’t told, and should have been. So I’ve compiled a Laparoscopy Survival Guide.

1. If your appointment is in the afternoon, don’t bother having your partner, friend, family member take a whole day off work. My appointment was at 1pm, and Husband was sent away not even allowed to wait with me in the ward before or after the procedure. They called him at 5.30pm to pick me up. I would have rather had Husband take off another day to take care of me and the kids.

2. Bring magazines cause it is boring waiting around by yourself. Books are good too, but you may not be able to focus on a book if you’re nervous beforehand or in pain afterwards.

3. Wear comfy clothes. Yoga pants or other trousers with relaxed waistband. Wear ballet flats or similar comfy shoes that can be put on and off easily as you’ll have to walk to the operating room in your hospital gown and shoes (they don’t wheel you into the operating room like they do in the States).

4. It often takes more than 24 hours to recover from a Laparoscopy. The nurse told me before the procedure that I would need help for a few days as it would take 1-2 weeks to fully recover. Shouldn’t I have been told this before? I have two kids, I can’t just let them fend for themselves. I heard a lady in a nearby bed asking if she could do the school run the next day–she was told no. This lady should have been told that she would need help. The nurses knew this, why couldn’t this information be placed on the leaflets we were all given?

It’s now almost 48 hours since the procedure and I am only starting to feel better. I still have abdominal pain and some trapped gas/pressure in my shoulder. Luckily my in-laws are here helping with the kids, but they have to leave tonight as we had all assumed I would be completely better by now. Hopefully I will be completely better by the morning.

Yes, I have endometriosis

I’ve known that I have Endometriosis since my mid-twenties, despite not having a professional diagnosis. I had horrendous menstrual pain and heavy bleeding as a teenager. My doctor prescribed me birth control pills when I was 18 after I passed out in a department store bathroom during one particularly bad episode. Until then, I think my parents assumed I was exaggerating the pain to get out of school. 

After years of struggling with pain, I was told I had Polycystic Ovarian Syndrome. A perusal of the internet made me believe that I had Endometriosis instead. Years later another GP told me that my symptoms were more in line with Endometriosis. But she added that laparoscopies did little to help and that having a baby would ‘cure’ the Endo. I went to a new GP, but they wanted to treat my symptoms rather than referring me to a gynaecologist.

I know I am lucky that I did not struggle with getting pregnant. But two babies later, I definitely wasn’t cured of the Endo. I still had the pain and heavy bleeding. And I refused birth control pills as they gave me horrible mood swings. We moved in February of this year and when I saw the GP at our new practice in May, I was immediately referred for a scan and appointment with the gynae. I had a laparoscopy/hysteroscopy yesterday.

They saw the endometrial scarring and burned it off. They also said inserting a Mirena Coil would help. Because I have a septum in my uterus (like a little wall dividing my  uterus in two), they ended up putting two coils in. This still seems crazy to me, but I’m hoping it helps. Only time will tell. It’s just nice to finally have a diagnosis and to feel that I’m on the road to wellness.