I’m confused #endo

[Elephant14]

Hi I’m new to this and have a very long confusing story and was looking for some advice on what to do so here it goes. I’m currently 19 years old and about a year and a half ago I went to my doctors because I was bleeding SO much even when I wasn’t supposed to be on my period, I would go through 5+ tampons a day and I would get these horrible pelvic and lower back pains so I went to my doctors and I went and had a colposcopy and they suspected endometriosis but never fully confirmed it. They put me on the contraceptive injection and the bleeding stopped. Now fast forwarding to this February I got taken in to hospital with the same pains but to the point where I couldn’t walk. They just kept on getting worse over time. So I’m in the hospital and they said it was my appendix so they gave me a laparoscopy and removed it. Now the hospital wasn’t good to me I wasn’t seen before my surgery or after. I’m going to quickly detour to a week later after my surgery I got a triple type of bacterial infection and my wound bursted and the infection spread all around my body and too my heart which has now caused me to have something called pericardial effusion(this is when your heart is inflamed by an infection and the sac around your heart fills with fluid). OH and also the hospital didn’t tell me about this I found out from my local doctors when they looked at my discharge paper!! So two weeks went by and I was sent back in to hospital with the same pelvic and back pains but getting worse. I was in there for a week and a half. I had many tests done but they apparently couldn’t find anything but i was seen by this gyno and she said that in my pictures that they took of my laparoscopy the lining of my womb was either overlapping or growing over my ovaries I don’t know and she just left it at that. It’s now the 25th of May and my pain is so unbearable when I walk it’s like someone’s stabbing me and it just cripples me to the floor and I pass out. I want to go back to my doctor but from everything that’s happened to me I’m scared I’m just going to get ignored for thinking it’s actually been endometriosis all along. Any advice would be amazing and I would be so grateful as I’m feeling really down and I’m not aloud to take any antidepressants because of my heart problem which is kind of funny from my point of view lol.

Thought i would add this in, on my medical records it says I didn’t even have appendicitis they just removed it anyway!

[endopains]

You are not alone - we all get mucked about. Don't think you're doing anything wrong. Find out if there is an endo centre near you and ask to be referred there.

I would make a complaint to PALS about your previous hospital experience so someone will sit down and explain it to you.

Keep going you can do this.

[NW248]

You can get an endometrial cycst that bursts and gives similar symptoms to appendicitis. Getting messed about by the medial profession if you've got endo is nothing odd. I wasn't diagnosed until I was 47, I diagnosed myself and paid to see a specialist. It cost about £200. Once diagnosed he put me on his NHS list.

You can find the list of specialists at bsge.org/centre some are only private, some do private and NHS, if they have an NHS email, it is an NHS centre.

[hm89]

I hated my first gynae, (she basically told me that I had a low pain threshold) so when I went back to my gp with worsened symptoms a few years later I flat out refused to be referred to that hospital and she sent me to the local Spire.

I think age does play a part in it. I was 17 at my first referral and told “there is no way you have endometriosis at your age, it only effects women in their 30s”. My second referral I was 24 and they said “yes you have endometriosis and there’s no much we can do, just don’t get pregnant”. It wasn’t until I was 28/29 I was taken seriously. It shouldn’t be this way at all but that’s my experience. I hope you make some progress soon!

[Elephant14 in reply to hm89]

Oh my god that’s horrible!! But thank you so much!

[Oncmed]

Ask for a referral for someone that specialises in Endo. No one listened to me when I went to the doctors at 16 years old.

I have had it since I was 15 and now at the age of 26 I’m finally being sorted and listened to because when I went to my referral I said I was absolutely sick of it and it’s gone on far too long. I mean the benefit for me is I’m not interested in having children at all so I couldn’t care less what they do, so long as it sorts the pain.

By the sounds of it you have excruciating pain, I’d demand for a referral and be hardcore in the meeting and say it doesn’t matter that I’m 19, this is a debilitating illness and I need it sorting.

Hope you get seen to soon!

[Elephant14 in reply to Oncmed]

Thank you, I don’t want kids either but I can’t deal with the pain! Thank you so much!!

[Oncmed in reply to Elephant14]

You are not alone! Just go in there and stand up for yourself. It’s what I did, don’t take any useless answers. Doctors laughed at me when I said I didn’t want kids at 16 and that I missed school every month. Now 10 years later, same symptoms and I haven’t changed my mind. I also stated how the pain and when it flared up my mental health would drastically decline and I would have anxiety so bad I wouldn’t want to leave the house. They can’t let people just live like that.

You will get sorted, just keep pushing them!

[Hannah_w1990]

that sounds horrific so sorry for what you've been through. That is a really shit explanation she gave you but I think it does sound like endometriosis.

[Pnut333]

Hey there. It saddens me to read your post. I think back to when I was 19 and was jerked around by many. I also pretty well self diagnosed. I remember being curled up at work a girl I work with told me she thinks I could have Endo. I mentioned to my OBGYN and he only then told me he felt it could be possible. I switched to a different Gyno. Many Doctors later I have had 4 surgery’s and still in pain. If you had a laparoscopy, you should get that report and take it to a Gyno that is experienced with Endo. Just google Endometriosis Specialist. I suggest a women, men tend to overlook! Then you can cross check Docs that come up to your insurance and who’s in network.

Your symptoms sound exactly like Endo to me. My thoughts are with you. My suggestion.. Get on continuous birth control and stop your periods ASAP! Endo forms and grows during your period. I was able to get the pain under control for years with continuous birth control.

[Elephant14 in reply to Pnut333]

Thank you. Iv been on every contraceptive pill and am now on the injection every three months but I’m still randomly bleeding and in constant pain it’s so hard