Endo is a curse: HI, this is my first post... - Endometriosis UK

Endometriosis UK

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Endo is a curse

SuperBee20 profile image

HI, this is my first post, and I would like to share my story with ya'll. I will try to keep this short, but I can go on and on!!! Last year I had a partial hysterectomy, I have not had a period since 2005, i had part of my lining taken out due to the fact that I was diagnosed with endo. So as you can see I've had to deal with this for years, finally found another great doctor, and he understood my symptoms, so I elected to have the partial, in hopes it would solve the problem...wrong!!!

Fast forward 4 months, i had a pain so bad, I thought i was dying(not really, that's how bad the pain was), anyways, landed inthe hospital for 3 days, due to rupetered cyst, blood had filled my stomache cavity, it was not a good time, the Dr's were not concerned with that at the time, I was having other issues as well, ( ended up with a spleen removal). Fast forward again to January 2017, I was have excruitating pain on my left side, couldn't walk, sit or even lay down. Had a lap done in February, couldn't find anything, ended back in the hospital for 6 days, due to a hematoma..yep that lap caused a grapefruit sized hematoma on the left side, still no relief for 5 months.

Finally went back to my gyno, had a ultrasound done, and boom there it was..ENDROMETREOSIS!!! ( it snuck back in). Dr. said I can fix you, you will feel so much better!!! I was super excited, Yes, I could finally get my life back, be "NORMAL" for once, enjoy life again!!!! So, I just recently had my surgery, it's been 3 weeks, I had my follow up, post-op, I ended up removing my ovaries and tubes, and I had so, so, so much endo, that my Dr. was shocked!! It had attached itself to my bowels, stomache lining and other places it should not have been. My Dr. said he had not seen Endo that severe in over 10 years. He also, informed me, it can come back, and it can attack/attach to other places, he's seen it happen!!!

So, here I am at 47, and I'm in a class by itself, I fall in that 20% catergory, that this EVIL Disease, will rear its ugly head sometime in the future, I always said I was wired wrong, or put together wrong..Hahaha.

Surgery is not really scary, they give you a good cocktail and to sleep you go!!! I love my Dr and the nurses that take care of me when they see me coming ( it's pretty bad they know me on 1st name basis)!!!

Any how, I'm glad I stumbled upon this site, and I'm glad I'm not the only one out there with this. I feel as though we are all survivors from this eveilness, yes it may come back, but at least more and more dr's are being informed about this.

Good luck to all:)

6 Replies

Stay strong lovely, you’ve had a real rough time with this haven’t you, sending you lots of hugs. Here if you ever need a chat. It always helps when you have good nurses and doctors who want to help.

I’ve just been diagnosed and have been told it can come back too, I am waiting for that at the moment. Dreading it returning but also enjoying some form of normality compared to what I thought normal was. I feel you😊.xx

Sending you lots of hugs❤️.xxx

Stay strong! I had a laparoscopy last year in December and a coiled fitted and was told it would come back ever...I'm now in bed due to pain as of endo...I think it's wrong for them to give us False hope! I hope your okay xx

SuperBee20 profile image
SuperBee20 in reply to Emma5397

Thank you. I hope your doctor's are able to remove the endo, and it never comes back. Yes, it sucks when no one fully understands what your going through, and it's not in your head!!

Prayers for you and all in this community 🙂

Wow, you've been through all of that and you would say that you're worse off following the surgeries? Have I read that right? Endo is such a curse and can be so debilitating it can ruin your life. I had my first lap when it was diagnosed - I had been in so much pain for years and my GP wouldn't do anything so I had to go private. I had some endo removed and both my tubes. I was told it was round my bowel and kidney. I'm wanting to have a final go at ivf later this year or Jan. If this fails I was told they would recommend a partial hysterectomy or full hysterectomy. I am/was hoping this would be an end to the monthly pain and ruptured chocolate cysts and kidney pain I get. I wouldn't say my first lap was a 'success'. I stayed pain free for a few months and then it came back with vengance. Would you recommend a full or partial hysterectomy or do you think you've been unlucky? I agree with Emma. It's not right they give us false hope. Best wishes xx

SuperBee20 profile image
SuperBee20 in reply to Music1

Everyone is different, some go through hysterectomies and have no reoccurrence with endo, where as some seem to repeatedly get it. Looking back at my partial hysterectomy, I'm not sure it would have solved my endometriosis, but since everything has been removed, one would think that one would be free and clear. Only time will tell. As of now I'm battling a serious infection 2 weeks after surgery, hopefully it will clear up.

Maybe I'm just one of the unlucky ones🙂

I wish you well in what ever decision you choose and a speedy recovery!!

Music1 profile image
Music1 in reply to SuperBee20

Thankyou SuperBee 20. You would certainly think that having everything removed would be the end of it. So sad to hear you're now having to deal with a serious infection so soon after. Unbelievable. You poor thing.

I am one of those 'unlucky ones' - if it can go wrong it will. I'm not being negative either - just a realist. Thanks for your 'experience/ advice'. I really hope you have a speedy recovery. Fingers crossed for you. Best wishes xx

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