When I first got my period which I got late in life, like 14yrs old. And then put on the depo shot but not because I was having painful periods. So for the majority of my young womanhood and early adult life I never had periods to know. The depo shot was giving me boils so once I became an adult I got off of it and it took a long time for it to get out of my system because I was on it so long. Eventually I just got on the pill. A few months after I started the pill I ended up getting pregnant at 24yrs old. At 7 weeks I ended up miscarrying so I started going to the OBGYNs for that. I dealt with these OBGYNs for about a month and a half to two months regarding my miscarriage. Once I was able to get my periods back and they're in coming every month is when I started having pain. I thought it was normal, I never heard of Endometriosis still. Every month my periods would get later and later and they got more painful each month too. I still just thought it was normal. It got to a point where I thought I was doing a good job on hiding my pain but at this point I'm not able to stand up straight or stand up at all I lose the color in my skin my voice changes, is how bad the pain is. By the end of the year my period disappeared for 7 months. I wasn't on birth control and I wasn't pregnant. I went to the OBGYNs again for this reason they did all these tests and found nothing wrong. But not one doctor or nurse ever asked me how bad are my periods they never asked about any other symptoms other than we still weren't able to get pregnant again. And their response to that was you got pregnant before you could get pregnant again. So probably about 4 years ago maybe 5 years ago, in 2 months I had three people tell me or bring up endometriosis. So I ended up doing research on endometriosis and the symptoms of it. The more research I did the more I was convinced this is what I have. Beginning of 2023 I went and started the process of the steps of getting diagnosed. By going to get ultrasounds doing whatever I guess insurance wanted before doing the laparoscopic surgery. In April I had the ultrasound done as one of the steps I guess, and they found I think at this time it was a 4.2 CM cyst on my left ovary. They called it a simple cyst. By June I ended up in the ER having emergency surgery. Turns out that simple cyst was a endometrioma that got up to 5 cm and then there was another one that was smaller. I was also bleeding internally. The said it was like I was having my period inside out. I was also diagnosed with stage 4 endometriosis. Also having my left ovary glued to my uterus, part of my bowels glued to something, covered in endometriosis in the pelvic area all over, and in my diaphragm. During surgery all they did was do a cystectomy and clean up all the loose blood, they didn't touch any of my Endometriosis. The surgeon said the endometriosis was too severe for her to touch and I would need another surgery with an endometriosis specialist. It's been 7 months and I finally got my referral to an endometriosis specialist and appointment set up.
How long did it take for you to receive a diagnosis? How old were you when symptoms started? How old were you when you received a diagnosis?
From the moment I started getting symptoms 8 years. I was 24-25yrs old when I started my symptoms. I was 31yrs old when I was diagnosed.
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
My initial symptoms were horrible periods with horrible lower back pain. They got worse over time where it would be debilitating and needed hydrocodone to help. I think my symptoms have gotten a lot worse. I'm on birth control pills right now so I don't get. Anymore but just get random flare-ups of cramping, my diaphragm Endo has been showing more. Get out of breath faster or just sitting. Pulling or stretching in the diaphragm
What was your experience with healthcare professionals during the diagnosis process? Were there misdiagnoses or misunderstandings? Did you experience any dismissive attitudes regarding your symptoms?
I felt like all the doctors and nurses know endometriosis but it's like they just know the word. I feel like they just go in their office or wherever and read stuff off Google and come back and read what Google said. I think the first set of OBGYNs should have asked more questions and maybe my Endo wouldn't be as bad right now. There has been quite a few doctors that I don't feel like they believe me when I'm in pain or believe it's that serious of disease. It feels like they talk to me like I don't know the disease. Or what it is.
How do your symptoms/ pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
I've lost my peace of mind. It's like never knowing when I'm going to end up in the ER for more endometriomas or my lungs collapsing. Which I have a go bag now I keep in my car so if I end up in the ER. I will tell people like the basics of things but I don't want to burden anybody so if my body tells me I can't do it I usually will just push through it and do it so I don't burden somebody.
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
My support system is there it's just hard to go from independent to depending on people and being a burden. Yes I feel supported, everyone just wants me better. Yes I feel like they try, it really sets in for them when they see a really bad flare up and u can see the worry in their face.
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
The people that did my first surgery in that time I thought I liked them and trusted them because they really did go above and beyond to try to figure out what was wrong with me. But once I was off the morphine and out of surgery and stop being drugged up and I talked to them with no medicine in me they really didn't know a lot. It was very disappointing. Now that I have a endometriosis specialist appointment in March I really hope I can feel better about it.
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
If I have any hydrocodone I will take hydrocodone for bad flare-ups so I can still go to work. No matter where I go I always have my bag of pain medicine I have my electronic heating pads.
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
This last OBGYN has me on birth control pills and she had me on nerve medicine Lyrica, but I was getting really bad memory loss so I stopped taking that. I think because I don't have periods now my pain is pretty manageable now the only bad thing is I never see the flare-ups coming. I haven't really changed anything I tried to eat better no red meat.
What strategies or treatments have NOT been effective in managing your pain? Are there specific activities or lifestyle changes that you've made that didn't help to alleviate symptoms?
Nothing too much now I can just take naproxen and in a couple hours feel better.
What do you wish you knew earlier in your journey?
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I wish I knew about endometriosis 8 years ago. I wish doctors brought it up more.
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
Yes I have found it helpful. I know everybody's bodies are different and react different but I feel like we all pretty much have some of the same symptoms. You can find somebody going through the same things as you or one person has this symptom like yours and then another person has a different symptom like yours.
Are there any misconceptions about endometriosis that you've encountered?
A lot of people really just think it's painful periods. A lot of people think that it is just reproductive organs it goes after they don't think it's a whole body disease. I have delt wit that. ALOT of people think it's curable or don't know there isn't a cure.
What advice would you give to someone who suspects they may have endometriosis? Is there any guidance you would offer to those recently diagnosed or struggling with their journey?
I think if anybody suspects that they have Endo they need to go to their primary care or OBGYN and tell them they think they have Endometriosis. Explain their symptoms to them and how bad their periods are. My guidance for someone that's going to go on this diagnosing journey, stand up for yourself with the doctors if it doesn't feel right or you feel like they're reading off Google there's another way to get to a specialist or another specialist. Listen to ur gut. Also do a lot of your own research!! That is probably the most important part is do your own research. If you do your research then you can know if that doctor knows what they're talking about to make you feel comfortable.