I’m new here! 🙋🏼‍♀️ Stage 4 Endo - Endometriosis UK

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I’m new here! 🙋🏼‍♀️ Stage 4 Endo

Mariahgarrett profile image
6 Replies

Hi everyone!! Just thought I would introduce myself.

I’m Mariah, I’m 24 & from a very small town in Ohio. I was diagnosed with stage 4 endo at 20 after my first laparoscopy on Oct. 26, 2013. I started my period at the age of 11. I have always had heavy, awful cramping periods but just thought it was normal. (Obviously it wasn’t)

So here is my story to diagnosis:

I was at work in February 2013 when I had a jabbing pain in my lower abdomen. I fell to the ground & couldn’t even walk! My boss ended up taking me to the ER. They did a CT scan & found some free pelvic fluid & a mass on my left ovary. They assumed I had a cyst rupture which was the cause of the pain/fluid & I scheduled an appointment with my gyno for the following week.

So that next week, I saw my gyno & got a transvaginal ultrasound to check everything out. The mass ended up being 3cm and inside my left ovary. He told me that he assumed it was endometriosis and that it was an endometrioma but wasn’t positive. He told me to come back in 3 months for a follow-up ultrasound.

3 months later, I was back at the hospital. The mass had grown to 4.5cm. Once again, I was told to come back in 3 more months....

In August, I was back for another follow-up ultrasound. The mass had grown to 5.6ish cm. He then said we would schedule surgery to remove it. I was terrified!

I ended up having surgery in October 2013. Before going in, my doctor told me that I had a 50/50 chance of it being ovarian cancer or endometriosis. I guess they did some blood test that came back abnormal? That did not help my nerves since I was literally going into surgery within the next hour.

During surgery - so I guess during my surgery while I was under anesthesia I vomited. I’m not sure if it was bc of the breathing tube in my throat or what. They didn’t give me details other than I puked. (I hadn’t ate in 12+ hours so idk why I did!) Also the mass ended up being a “chocolate cyst” and said it popped as soon as they touched it.

After surgery, I was miserable. Very sick to my stomach but I healed quickly which was nice. I had my post-op appointment two weeks later where I was diagnosed with stage 4 endo. He said it’s the worst case he had ever seen & was on my uterus, ovary, Fallopian tubes, rectum, colon, bowels, bladder, etc. Basically everywhere. He cleaned up as much of it as possible. He put me on a new bc pill and I tried that for a year. My cramps and endo pain after surgery in oct 2013 til about late 2015 weren’t as bad as they used to be. I feel as if the surgery really helped.

In 2015, I decided to stop taking the pill (I had weird side effects) & try the depo shot. I did the 3 month dose to try it out. I bled 4 months straight. Every. Single. Day. I lost a ton of weight and was just very ill looking. Needless to say, I stopped taking it.

During the time of August 2015 - until today I haven’t taken any form of birth control. I felt helpless and practically gave up on it or any hope of relief. I have lived & suffered with the most terrible pain. I cry & hurt to the point that I vomit. It has been awful.

December 13, 2016 - I had a very very very bad period. The worst I had had since before laparoscopy in 2013. I went to the hospital & they found a 4cm mass in my right ovary(last time it was my left ovary). The endometrioma was indeed back. I have had follow up ultrasounds since then(almost going on a year of follow ups) and I now as of my last appointment, I have not one but TWO masses in my right ovary. They said another mass is growing off the original one?? The masses together total 13cm in size.

So again, I’m from a very small town in Ohio. The population is barely over 3,000 people. My hospital is also very small. They decided to refer me to Cleveland Clinic to see a specialist which is a FOUR hour drive for me.

My first visit to Cleveland Clinic was a month ago on Oct 26, 2017. My boyfriend (who is very supportive) & I left our house at 9am & arrived at CC over 4 hrs later at 1:30pm. It’s a very long drive but worth it. I saw doctor Falcone. He is the chairman of the OBGYN department at Cleveland Clinic and I really enjoyed my visit with him. He will be performing my second lap on Jan 8, 2018. He is also going to insert the Marina IUD during surgery which I am also nervous about. I just need some sort of treatment that works and I hope this does. I am 5 foot tall exactly and 118 pounds. I am nervous it’ll make me gain weight but *fingers crossed* it doesn’t do that.

I’ll update this after my surgery!!

1.) Let me know what you think about Mirena IUD. I’ve also searched & read a lot on here too!

2.) What do you think I should do to be comfortable after surgery on my 4 hour car ride back home?

I know this was real lengthy but if you took the time to read, thanks so much. :)

6 Replies

My gynecologist actually advised against the coil for treatment since I had such bad cramping. I’ve also seen many women on here and in real life have a terrible time with the coil.

I’d definitely suggest a soft blanket and a pillow to put between you and the seatbelt.

Good luck to you and I hope things get easier for you.

Mariahgarrett profile image
Mariahgarrett in reply to

I’m so torn on what to do! I’ve heard some great reviews on it but then I’ve heard some very very bad ones as well. It’s scary.

Good thinking! The drive home is going to be rough but hopefully I’ll still be feeling okay from the anesthesia — haha!

Thanks!! & thanks for the reply! ❤️

in reply to Mariahgarrett

If you have it and you have a hard time you can always have it taken out! Try thinking of it that way.

Yes I felt fine on the ride home for me. Maybe get your pain meds/anti nausea in advance so if you need it on the way home you have it.

You’re welcome. Good luck!

NH88 profile image
NH88 in reply to

My gp advised the coil. I refused. I had read up on all the facts on it and even without others giving me both positive and negative opinions on it i knew it wasnt for me. Tilted womb and trouble with smear tests convinced me that it wasnt the brightest of ideas. I was told i would have to be knocked out for it to be inserted and removed aswell!!!

When i went to the specialist consultanthe said that was the worst option for me.

I also second the pillow. At the back of you and underneath you. Wear baggy clothing that is warm and comfortable and take a blanket. You may want to sleep in the car aswell so a pillow for your head maybe. I was pretty much a bunch of pillows traveling back lol and i wasnt coming back from a hospital 4 hours away.

Also dont leave until you are feeling well enough. If you feel nauseous then wait a little while before traveling.

I took a toilet roll and a bucket (lovingly refered to as the sickybox in my house) just incase.

Good luck. I hope it goes well for you. If nothing improves try a specialist in the field of endo they maybe able to give you some more options.

X

Emmyeve profile image
Emmyeve

That was really nice of the gyny to tell a frightened young girl that yours is the worst case they’ve ever seen! 🤦🏼‍♀️ I can’t advise on coul because I don’t take any meds/bc for my endo. I, like you had severe periods from a young age. Terrible pain where I would struggle to even lift up a pen during school, but you’re told that’s just normal so you try to get on with it. Since I switched to an extremely clean diet (cut out all gluten, dairy, sugars, grains & starches) my periods are light, not painful and short! I switched back to a “normal” diet in the last year and my heavy periods and endo symptoms have come back. I am due to have an endometrioma removed shortly, just awaiting a lap date. I can offer advice on after the surgery. So a pillow under your bottom and around your back will help on way home. Make sure you MOVE about after surgery best you can. It will feel like you’ve been hit by a truck (a small one don’t worry 😉) and you can’t lift yourself up but walking about is the quickest way to get all of that trapped gas out of you as that is the majority of the pain we feel after surgery. Move your arms and legs and lean on a nurse or your partner and slowly walk up and down corridors. You might already know this stuff as youve had lap before but just wanted to share what worked for me. It’s really not all that bad, just rest up for the week after. Look into how diet and lifestyle can help keep endo suppressed & good luck Hun xx

Fabbird profile image
Fabbird

Hi, good luck for your surgery. I’ve had very successful experience with the Mirena. It’s the only treatment I’ve needed for stage 3 endo. Everyone is different, but I wanted you to know that it can certainly work.

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