A couple grappling with Endometriosis

MANY people do not understand endometriosis and how seriously debilitating its effects can be. They often label it as ‘bad cramps’, and think women with the condition are overreacting to pain.

When All Woman caught up with Sara and Brian Stanford of Bliss Bridal Boutique, the couple candidly shared their experience with the disease for seven years, how it has affected Sara, and treatment options they have had to employ.

Sara explained that from as early as her 20s she would experience pain leading up to her cycle, during her cycle and after it had ended. At that time, she said she thought God was just punishing her whenever the cramps were bad.

“They weren’t always bad but there were months out of the year when I would be in the bathtub in a foetal position with hot water running over my back trying to have relief and I just couldn’t figure it out. I tried changing my diet, I stopped drinking alcohol, I tried various things and nothing was helping. It was preventing me from being able to function on a regular basis,” she shared.

This continued for years and was coupled with a misdiagnosis of fibroids, ulcers and other issues. But in 2010 after being treated by a gastroenterologist twice, she was referred to a gynaecologist to be screened for endometriosis and then came her confirmation.

“I was just glad to have finally known what was ailing me. So once I found out what was happening it was good. There was no denial or ‘woe is me’. It was more of what do we need to do and what were the treatment methods. But at the time I don’t think I understood the full ramifications of what I was dealing with,” she said.

Sara explained that she was placed on birth control to stop her cycle and found solace when she did surgery in 2012 to remove most of the endometrial scar tissue.

“Without my cycle, then I could avoid the pain. We got married in 2012, I had the surgery shortly after, and I felt so good and healthy that year,” she explained.

But as fate would have it, the scar tissue returned and Sara was once again in a situation reliving the pain she thought was behind her.

Moreover, her husband Brian said this period was not easy for him, as it was frustrating to see his wife in pain and know he could not help her.

“You can go for the pills, hot water, but when she’s in pain there’s nothing you can do physically to help her,” he said. “She had this water bottle that she had boiled and it was so hot that I could barely touch it, but she placed it on her stomach and got relief, or she would have the hot water running down her back. Sometimes she was knocked out and could not work. There were days when she was vomiting and I didn’t know what to do,” he said.

He added: “She ended up in the hospital four times. One of her lungs collapsed and she had to go through physiotherapy. That is not easy and there is frustration that a guy will go through [such as] intimacy issues, constantly reminding her to take her medication, and worse, when you don’t see an end in sight it can be frustrating.”

Sara said following the lung collapse she and her husband had to sleep in separate beds as she would be using the bathroom 10 to 12 times each night and in order for her to experience comfort, it was best for them to sleep apart.

She is currently using birth control as her treatment method.

Both Brian and Sara encourage individuals to educate themselves about the condition and rid themselves of the myths.

“From school teachers up to employers — educate yourself. I’m a small employer so I understand the difficulty of having an employee who has this condition. The employee has a responsibility to try and manage pain as best as she can, and as an employer you are within your legal rights to do what you have to do if she goes over what she’s allotted in terms of sick leave, but I will also ask employers to be more considerate. If you have a good, solid employee who does what she has to do but from time to time has issues with this condition, when she comes to work and you see that she’s uncomfortable, possibly give her a 15-minute break to put the hot water bottle on her back. Have a level of compassion.”

For men whose partners are dealing with the condition, Brian has some advice:

“If a man is dealing with this and knows it’s a hard task and walks away, I can’t blame him; people are human. On the other hand, some of us need to be a bit more understanding. Do whatever you need to do to make it work.”

Sara added: “As a young girl or woman, if you are having cramps, vomiting regularly, you need your hot water bottle constantly, have diarrhoea and can’t function … if you have any of those symptoms, go to your doctor. The earlier you catch it the better. Remember, endometriosis can spread anywhere — to your lungs, to your brain, and it’s a very debilitating condition.”