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First surgery with stage 4 endometriosis

Hi all,

I just want to share my story with you about my fight with endo so far. I remember exactly my first painful period, it happened already when I was 16 years old. Everyone around me said that it couldn't be that bad and I'm just overreacting a normal period everyone is suffering from. There were some days when I couldn't go to school, there were some when I fainted, vomited, and had diarrhea. I started to use contraceptives, and my pain went away for a while. Then it started again, they just changed the pill to another one, it went away, and it went on like this for many years. I already suspected that I had endo in my early twenties, I shared it with my doctors as well, but they ignored it.

This year has been especially difficult. I had such painful periods that I seriously thought I was going to die. It went on for 2 days with this horrible pain, and nothing helped. Finally I found a gynecologist who diagnosed me and then sent me to the hospital under social security (I am currently living in Spain). My diagnosis was about to be finally done after 13 years, but then COVID-19 happened. All my appointments were postponed (without new date). I had an MR and a visit with an endo specialist left. Depressive symptoms also came out, being alone in the quarantine with my pain without help (not to mention I was writing my PhD in the meantime). Pain got so bad that after the hard first days many symptoms persisted even for 2 weeks. I defended my PhD (of course organized for non-period day), and my husband told me to try CBD. I didn't trust anything anymore, even tramadol didn't help...But CBD did, and I was so happy for a moment!

Appointments were reorganized, they finally did my MR, then I had one with the endo specialist. He told me I had the worst of the worst. Stage 4 endo (only 1% of all endo patients have this), which is basically almost everywhere. I have a lot of tissue infiltrated in my vagina, between my colon and vagina and even in my colon - this caused the worst symptoms during my periods. They said most probably my bladder is also infected. This was at the beginning of September, they told me that the surgery is urgent now. My surgery will be on next Monday (Nov 16), and I'm terrified. They will cut out a part of my colon, and if it's a long and posterior cut, they will have to put a temporary ileostoma. They will open my vagina and who knows what else. It will be a 5-6 hours long surgery and even if it will be successful and without further complications, I have to stay at the hospital for at least a week. My husband cannot visit me because of COVID...I know it's a good thing that I'm finally diagnosed and on my way to get better, but I'm also very angry at everyone who told me everything was fine during 13 years. It shouldn't be this bad, it could be even an easy operation...

My next surgery will definitely be a hysterectomy: I just cannot wait for it to come back until menopause. And as it is very aggressive, it will come back, the question is how fast and where.

Thanks for everyone who read it, I hope everyone is doing well and remember that we are all extremely strong! We do successful and functional lives despite of this cloud hanging over us all the time.

  1. Hello , thanks so much for sharing your story with this community. I was in Spain during the lockdown back in March… until June. I was actually in Madrid, all by myself, and with endometriosis, oh my… it was a nightmare. So well done you for making it through, whilst working on your PhD (!!!) CBD has helped me quite a lot too, I’m glad it has worked for you.

    Now, regarding your upcoming surgery…! Like we say in Spain, “ánimo campeona”. You got this. It will be tough, but guess what, you’re tougher. It will test you, you will have your bad moments, or even bad days… but it’s temporary. All you have to do is let your body heal, let the days go by. Give yourself time and space to do nothing. To rest, and to cry if you need to. You will wake up one morning and the worst will be over. And as your body heals you will get your life back, one day at a time.

    If you have any questions, any doubts, or you just want to speak your truth and share it with us, we are here for you. Reach out whenever you need 😀 – Jessie (team member)

    1. Hi Jessie, first of all, it is such a pity we didn't know each other when you were in Madrid! I am also here. It must have been horrible for you alone with such strict quarantine. It is bad for any person alone, but with endo, it's just horrible...I'm so sorry that you had to go through this.

      Thank you so much for your words! I already feel a bit better. I'm so happy that I found this forum, I feel like I'm not alone with this. Sometimes it's so hard to explain other people what's going on...

      I will definitely tell you about the outcomes of my surgery, I hope it will help others to prepare for it.

      Thanks Jessie for being here for us!

  2. This sounds so hard and painful and wish you luck!
    I've had symptoms since I was a teenager but wasn't sure at first what it was that was putting me in bed screaming in pain. It's just gotten worse the last year and my OB suspects 3-4 stage endo. Fortunately she's a great OB and knows her boundaries. She said she won't do any surgery on me herself, which unfortunately means no immediate diagnosis but it's because she doesn't want to do it wrong and hurt me. I've got an endo specialist appointment in May.
    Feeling your pain!

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