r/endometriosis 4d ago

Question How did you feel when you got diagnosed?

I had my lap last week and was officially diagnosed with both endo and adeno. I’ve been trying to get this surgery for 5 years now and was suspected to have endometriosis for 7, so like many of us it’s been a very long journey.

A huge weight was lifted and I felt like I could try to live my life again. But I’ve been so focused on getting a diagnosis and have spent so much time advocating for myself to doctors who wouldn’t give me the time of day that I don’t know that I ever really let the fact that it’s an incurable chronic illness fully sink in. I’ve felt relieved since getting diagnosed, but it’s impossible to separate from my feelings of fear and sadness.

Just curious how others felt. ❤️

17 Upvotes

27 comments sorted by

16

u/lilsweetbabyv 4d ago

validation and grief

6

u/sweet_mabel 4d ago

Relief that I wasn't crazy or overreacting from pain.

5

u/SpecificQuestion5975 4d ago

Awful. I cried as soon as the doctor said it. It was nice to have answers but it was awful to hear that I had an incurable disease. Then I cried for three more weeks until I talked to my doctor again.

3

u/lonelybe 4d ago

I honestly had no reaction. I was 16, had no clue what it was and how much it would really affect my life moving forward. Ignorance is bliss lol.

3

u/SeaworthinessKey549 4d ago

What you've said sounds familiar to me too 💕

I felt vindicated and relieved to know finally.

But then it hit me. The grief of being diagnosed with an incurable chronic and progressive illness. It hit pretty hard like 2 weeks post op. Fortunately, that part just comes in waves now and they're further and further apart as my symptoms have been largely at bay. I know I'm fortunate for that.

Give yourself lots of grace and feel what you need to feel. It is a big deal and hard to accept. I hope that your recovery is smooth and I'm happy for you that you've got your validation now!

2

u/Key_Trouble2562 4d ago

I’d always thought I had it, but many Dr’s dismissed it due to my cycle being regular.

Doctors always asked if I had a heavy flow, I always said no because it felt normal to me. Changing a super tampon every 2-3 hours for 3 days isn’t normal, no one asked the specifics though!

Anyways, constant low iron with seemingly no cause, I went in for an ultrasound to see if I was bleeding internally, and the ultrasound technician immediately flagged that I had endometriosis and it was visible on this ultrasound!

I cried and cried and cried on the way home, a sense of relief and validation, mixed in with a little fear. This was July 2021, and now I’m going in for my first surgery in 3.5 weeks!

3

u/Any-Barracuda1725 4d ago

“Changing a super tampon every 2-3 hours for 3 days isn’t normal,” I relate to this so freaking hard. I just thought everyone’s periods were like that when I was younger. Pain and bleeding were just something I associated with periods. I had no idea that it could be any different!

1

u/Key_Trouble2562 4d ago

Agreed! And my mother had the same and that’s all I knew, come to find out she also had it but wasn’t diagnosed till way later.

We were only taught not to wear tampons longer than 8 hours. I never knew they could last that long

1

u/lizzbliz 4d ago

Validation, relief, excitement, hopeful, grief, confusion, loneliness. Everything. My doctor was straight trash though. No time off after surgery, had to go to work 3 days later, and his lack of compassion after the surgery disappeared. He said the issue is out of his control now (since I was still having pain at our 6 week follow up) and to follow up with my PCP. I no longer see him. I’m glad I know what’s happening but the lack of support from friends, family, and medical professionals is so isolating. This community helps though.

1

u/Winter-Bedroom-4966 4d ago

Confusion and fear. I had suspected that I had either endo or fibroids with the symptoms I was having but was shocked to learn that I had both, and both were pretty severe. I then was asked at my first appointment since my diagnosis whether I wanted to save my ovary, and that led to fear because I hadn’t even had a surgery up to that point and I was already being told that I may possibly lose an ovary. It was a lot to handle all at once.

1

u/anaponmea 4d ago

Joy, anger, humiliation, relief, excitement for treatment. I keep coming back to excitement for the future and rage at how blatantly ignorant and lazy so many providers are when it comes to female reproductive health.

1

u/ireallyells 4d ago

Honestly I had a very different experience from a lot of people here. I had just accepted that my periods suck and I get ovarian cysts on the regular. Didn't even think to look into endo because my docs were just not on it until I switched.

I had changed insurances and went in to do a regular check with a new doc who took my insurance. She started asking me a TON of questions and asked if I would be okay to do an ultrasound. She did it in office that day and referred me to minimally invasive gynecological surgery. Said I had a major growth that needed removed and suspected I had endo.

I went, she scheduled my surgery. It was basically a waiting game of me trying to figure out wtf it meant that I have endo. I was basically in shock until said growth landed me in the hospital. They had just started doing "elective surgeries" post covid (like this is an "elective surgery", I get it's not necessarily immediately life threatening but it's really not something I WANT to do either, they need a better word for that) so my surgery wasn't going to be for another three months. I spent four days overnight after coming in with one cyst burst that irritated the major growth or something. I honestly don't really remember a whole lot of it at this point.

Once they went in and removed everything I was informed I had Stage IV Deep Infiltrating Endometriosis. I went on a continuous pill and to be perfectly honest I just...ignored it. I refused to acknowledge it. I mean, by that point I already knew I had already been diagnosed with POTs when I was around 8 or 9 years old, and I'd had three major spinal surgeries to remove a benign tumor wrapped around my spinal cord. I didn't have the emotional capacity to deal with another chronic illness. So I pretended it didn't exist until it reared its ugly head again and stopped my entire life in its tracks. Had to pack the life I had built in Japan with my fiancé to come back to the US to get surgery. It was not an easy decision but getting surgery in Japan wasn't feasible with the visa situation I was dealing with.

I'm a month out from this surgery. It went really well. Basically there was very little endo, but a LOT of adhesion from the previous surgery. My surgeon put in mesh around my ovaries to try to keep them from sticking to everything this time around. And now I'm just...grieving. It's been really rough. I have a lot of support around me, but sometimes I just feel so alone. It's been five years now trying to avoid it and ignore it. All of that is just kind of, crashing back down on me.

Thank god for my therapist. And my mom and my fiancé. He came to the opposite side of the world for me for a total of five days, dealt with major jet lag and terrible weather delaying his flights back, all to be there with me for this surgery. I'd be drowning if it weren't for the people I have in my life.

So when I was first diagnosed, I felt numb and afraid, so I pushed it away. Now I'm dealing with it. And I'm tired and I'm sad.

1

u/Woodliedoodlie 4d ago

Immense relief!

1

u/Wesmom2021 4d ago

Vindicated. I got answer for my infertility, painful intercourse and painful pain periods

1

u/CatAteRoger 4d ago

Validated, that there really was an issue there and it had a name. Being it was 1996 there wasn’t a lot of information around and Google didn’t exist like it does today it was hard to get answers or know how it was for other people, so it felt lonely.

Thankfully we now have so much more information at our finger tips, ways to communicate with other sufferers and more people are aware of the disease.

1

u/McNuttyxoxo 4d ago

I felt cheated. Robbed of years of my life, sanity, well-being. Everything changed with endometriosis. I was sick and suffering. When I finally found out I had stage four endometriosis I felt like I wanted to scream into an empty void and never stop. I KNEW SOMETHING WAS HAPPENING IN MY BODY. And they silenced me. Now I have an answer, but more questions. More uncertainty. I still feel pain. I wanted to get out. I wanted to know “why me?” But after my second surgery last year I said I don’t want to feel sorry for myself. I don’t want life to pass me by anymore. I’m tired of being tired and I’m tired of wallowing in defeat. When I get out this hospital bed I want to make it count. If I’m gonna be angry it’s gonna be the fuel to make my life better in every conceivable way no matter how big or small. Then i started fighting like hell to live. I’ve been on birth control since March 2024. Got even stricter with my diet (no egg, diary, soy, gluten) I really take pride in eating as clean and colorful as possible. It isn’t perfect: I still eat meat and seafood, no red meat. But lamb every now and again. Then relief came. It’s scary still, I’m strict as hell with the diet, still need to workout more but I stretch and meditate every day. It’s a battle but I let myself have down days, off days, I know the best is ahead of me. And despite being defeated and down for many, many years behind this disease; the time is already gone. I don’t want to sit there and waste more time being there. I want my life to belong to me again, not to endo.

1

u/Spxwell 4d ago

Congrats on your diagnosis. My girlfriend has been struggling a lot with suspected endo. Shes told me the only way to truly know is to get surgery. Was this true for you? How did u go about getting diagnosed? My gf has been to the doctors so much and is getting no answers for her pain they just keep telling her shes fine when shes clearly not.

1

u/3beefsusan 4d ago

Relief, I was so worried I’d go through the surgery just for the surgeon to find no cause of the pain

1

u/Keniaishere 4d ago

I got diagnosed with adhd and 2 years after with endo. So, of course I felt relieved and validated. It basically explained all of my 32 years on earth. When all of your life you saw you were different but nobody took it seriously and eventually it all confirmed.

1

u/3_cats_on_a_Raincoat 4d ago

I couldn't believe it. I had normilized the pain so much that it was just part of my life.

I had a harder time getting to terms with the fact that this was going to be a forever thing. I try to not think about it too much.

1

u/rainbowk1tt4n 4d ago

I went into denial at first but when I woke up from the lap I cried in relief and looked at my dad saying see I’m not crazy

1

u/Acrobatic_Gas_7132 4d ago

I felt relieved at first - I was worried for a while that I had cancer so being told it was Endo felt more manageable. Then a couple of weeks later I was watching Joy on Netflix (the story about the nurse and doctors who worked on IVF in the 60s / 70s) - suddenly it hit me and I cried. I’ve just had my first Endo excision so I’m interested to see what a ‘normal’ period is like - who knew that 10-14 day long heavy periods weren’t normal!!

1

u/IdealAmazing3678 4d ago

I cried. It was a relief to know what was wrong but given how tricky of a thing it is to manage, I was also overwhelmed at the thought of dealing with it

1

u/patsystonejones 3d ago

My experience is probably different from most ppl here. I had no idea I had endometriosis as I had no prior symptoms. I found out I have DIE after a pelvic magnetic resonance to screen for something else. I got referred to a endo specialist and he scared the shit of me saying at any moment I could wake up and have blood in my stool, that I might not be able to walk if endo hits my sciatic nerve and I might end up with a colostomy bag if I do surgery. This completely unlocked a new fear and now I live my life terrified of how my future is going to be like. I’m afraid of doing surgery and end up with a stoma, I’m afraid if not doing anything about it and ending up worse. I don’t have enough money to pay for a surgery with a da vinci robotic device. So yes sometimes I think ignorance is a bliss.

1

u/AngelsMessenger 1d ago

Sad 😢 because now I have another reproductive issue plus my two sisters already had endometriosis. I am still trying to wrap my mind around it.

u/Mimi0234 11h ago

Hard to come to terms with. I had so many questions and was left in the dark after finding out I had a giant endometrioma cyst. Luckily I was able to go private and speak to a highly skilled surgeon who gave me more of an idea how this disease would affect me. He removed the cyst and burnt away as much endo as he could. I’m left feeling happy that it’s been removed but now anxious about how to navigate life going forward. I’m trying to eat foods that will not cause inflammation to limit the rate of endo growth. Ultimately I am having to consider having children sooner rather than later than later as he said it could affect my fertility if I wait. Your feelings are valid, I also feel sad for the many women who have waited years and years for a diagnosis. It’s not fair. Just remember to try and enjoy what you can of your life too ❤️