What was the beginning of your endometriosis journey like before you knew what was happening?
I was lucky enough to know what was happening early because it runs in my family and I researched it in high school.
When were you diagnosed, and what was your journey to getting diagnosed like?
I didn’t have a firm diagnosis until I was 38 with my first laparoscopy.
What did it feel like to finally have a name for what you were experiencing?
Since I already knew I had endometriosis since I was 15 the diagnosis didn’t matter much to me. in fact, I found it insulting that they said it was just minor, but I was on the marina and shouldn’t they shouldn’t have found anything.
How does endometriosis show up in your body and daily life?
This disease has slowly taken over my life to the point that I don’t have a normal life. I have to watch how much physical activity I do in a day. I have to protect myself at all costs, and the fatigue is devastating.
How would you describe the pain or physical challenges of endometriosis?
I’d explain it as life altering
Do you have “good days,” and if so, what do they look like?
I do have good days and I always get fooled by it and do something extraordinary and then I’m paying for it the next few days
How has endometriosis affected your education, work, routines, or ability to make plans?
As far as education, it’s extended my PhD because I’ve had periods of time that I’ve had to take out from doing it the same with work there are days that I have to call him because I can’t even work from home. It’s I’m in too much pain as far as routines or the ability to make plans I’ve learned that I can’t do that or know that I will have to cancel at the last minute, possibly if I’m having a flareup.
Has endometriosis had an impact on your finances or access to care?
Yes, it’s had a major impact on my finances and access to Care finances because I know that I can’t. I physically could do jobs that pay more than what I’m doing, but I also know I’m lucky that I’m in a job that I can have bad days and I can call off so I’m kind of stuck where I’m at as far as access to Care. Yeah I can’t get private insurance because it’s considered an existing condition and they won’t pay anything out. In fact I just canceled my private insurance that I’ve had for almost a decade now but it’s useless. I’m paying 3 to 4 grand a year for this insurance that I can’t use.
What has your experience been like with doctors, specialists, and navigating the healthcare system?
I will say most doctors are horrible when it comes to understanding endometriosis. I also want to say the NHS and itself is horrible. When understanding endometriosis I just had major surgery and I’ve lost my kidney due to this disease and my uterus and full hysterectomy they had to shave my intestines and I had a hernia umbilical hernia all to this disease and when I came out of surgery, the dietitians couldn’t offer any kind of food that would be reasonable for somebody with endometriosis that usually entails a low fob diet, which just was startling to me that hospital dietitians didn’t understand the diseases in the areas that they are helping to support cause to me, food is medicine
What has your experience been with treatments, surgeries, medications, lifestyle changes, or other approaches?
So I have had three surgeries now two laparoscopy’s and then just recently the major surgery that included a full hysterectomy and loss nephrectomy I think is what it’s called the loss of my kidney and the rectal shave and umbilical hernia repair as well as you know, I’m getting rid of the endometriosis in my cavity medication’s. I have tried codeine is like the only pain medicine that seems to kind of work, but I hate taking it because it causes constipation issues which rectal problems is huge for me so it’s very difficult to find pain relief. I use tens machines, hot showers and lots of Tylenol or paracetamol and ibuprofen. Other life changes. I just don’t plan anything anymore. I don’t. I don’t have much of a life. I’m hoping this latest surgery will give me some of my life back.
What has it been like to live with a condition that often isn’t visible to others?
It’s hard for other people to understand when you look well, but aren’t and I find it very difficult to tell people because everybody just thinks it’s a bad period and when he tried to explain, it’s more than that it’s I just found it. It’s easier to not say anything.
Have there been times when you felt dismissed or not believed about what you were going through?
Free doctor I have ever talked to. I feel like I have been not believed in fact when Dr. said if I was having all of those symptoms, it would be the worst case of endometriosis he’s ever seen, and then he did a laparoscopy on me, and he indeed said it was the worst KC I’ve ever seen, and it wasn’t until then that he believed me and the same with this latest surgeons I would tell them everything that’s going on and then even afterwards, they said it was the worst case they’ve ever seen and I’m going white. I wish people would just listen.
What has the emotional or mental side of living with endometriosis been like for you?
I think that is the hardest part I have gone through so much anxiety and depression. It’s been very difficult.
How has endometriosis affected your relationship with your body, identity, or sense of self over time?
It is definitely killed my self confidence and I definitely don’t trust my body. I wear period pants all of the time I’ve had to make so many small adjustments like that making sure I have medication on me at all times I can’t. It is very difficult to go anywhere or do anything with this body.
How has endometriosis affected your family relationships, friendships, or dating life?
It has affected my relationships. It’s affected my relationships with my parents with my siblings with my husband with my friends because I can’t do anything anymore and especially with my husband it’s it’s a horrible disease. That literally sucks the life out of you.
Has endometriosis had an impact on intimacy or your sexual life?
Yes, that is definitely what has happened we no longer our intimate
If relevant to your experience, how has endometriosis influenced your thoughts, decisions, or experiences around fertility and family planning?
We did try two rounds of IVF and neither one of them took, and in fact, I think all it did was flare up my endometriosis full-time, which is not something that I would’ve thought about. I wish doctors would tell their patients that IVF just puts gasoline on the fire of endometriosis
Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?
Tens machines are the absolute best
Do you feel supported in your journey? Who or what has helped you most?
My husband helps the most even though he doesn’t fully understand and then my recent bits with the endometriosis center at Royal infirmary has been really good
Have you connected with others who have endometriosis, either online or in person? What has that experience been like?
Yes, I am on every form that I can find just to understand what others are going through and how I can help others but also what I can learn
How has your relationship with endometriosis changed over time?
It has changed my life. It is taken away my life. It has made me realize that the worst there are worse things than death.
More broadly, what are your thoughts on how the medical community understands and prioritizes endometriosis?
I don’t think the community medical community understands or prioritize endometriosis. I honestly don’t think most of the doctors even know what they’re talking about.
How do you feel endometriosis is represented in society or the media? What would you like to see change?
I would like to see it, not referred to as a bad. I’d like to see it, not referred to with periods of the reproductive organs at all. It is another disease in your body that’s like cancer and it just grows and as its own atmosphere, it has nothing to do with periods. I wish the media would understand.
What would you like more people to understand about endometriosis?
That it’s a debilitating disease and more than one out of 10 women to have it and yet nobody knows nothing at all about what causes it why it’s here or that or and there’s not even a cure
When you think about the future, what fears, concerns, or hopes do you have?
My fear is that it keeps going on that there’s not enough research backing this disease to figure out what we can do to make it better and more lier
Is there anything else you’d like to share?
I think everyone should be questioned about their experiences. Every woman that is when you go to the GP there should be a tick list of questions or your painful or your periods painful do you have problems going to the bathroom all things associated with endometriosis because one doctor just asked me before the surgery about my issues going to the bathroom and he was like why didn’t you tell anyone and my only thing is nobody asked and it’s embarrassing to really say why aren’t doctors preemptively asking these questions?