Confused,Lost and Overwhelmed! (It's a long one sorry!)

[gremlin0105]

Hey! I'm new here.

Basically, since I was 13, I have been struggling with digestive issues (Ibs). and over the years it got worse. At the age of 16, I decided to get the contraceptive implant. This was the single, most worse mistake of my life. It was like it flicked a switch within me.

Fast-forward 10 years, and countless Dr's appointments where I had mentioned endometriosis as it runs in my family. I'm now 23, in constant pain, depressed, anxious and quite frankly, fed-up! I went to the doctor about passing blood with every bowel movement, and with this pain. I was given countless creams but nothing worked. I got referred to the Colorectal unit at the hospital. This was the appointment that changed my life.

I went to see the Dr, he asked me questions, examined me, prescribed me a strong cream and at the end, he asked me 2 of the most important questions. 1. " Do you pass clots when you're on your period?" the answer, yes! 2. "Is sexual intercourse painful?" the answer, Unbearable! He (the Dr that had seen me once for something totally different) referred me to gynae and to have a sonogram.

The sonogram went well. She said that my ovary looked polycystic and that was it. I then saw my gynae. After a few questions, I mentioned endometriosis to which he wanted to examine me. I allowed him to examine me but he could hardly get the pokey thing in as I was in so much pain that particular pain. As I cleaned myself up, I jokingly said to him "If you think it's endo can I skip the pill (because after the implant, I vowed to myself to NEVER put that stuff in my system again) and go straight to operation. He spoke to the consultant who agreed and on the 27th of September, I had my Laparoscopy.

When I came round, I asked what they found. They showed me the image of one spot on endometriosis which they had burned away. Nothing else. Everything in me was screaming that there's more but I ignored it. I am still experiencing the pain I was in before the surgery and to top it off, I think my wounds are infected. I have a follow-up appointment in February. Depending on what happens after that I am thinking of getting a second opinion.

So I guess what I want to know is, Have any of you had similar experiences? Did they miss anything? What did you do? Do I have endo? I have so many questions!!

[Hidden]

Hi there,

Golly you have been through it.40 years ago I had some very similar experiences to your own.

For me, Evening Primrose helped.

misdiagnosis in my day was a fact of life. My GP stated that I did not have Ednometriosis, 6 days later I underwent emergency surgery for a twisted cyst on my left ovary. After surgery I was told that I had extensive endometriosis (endo) in my pelvis, bladder, bowel, back etc.

They tried to remove as much as they could see.

Confused, angry, fed up and depressed, I changed my doctor.

A full hysterectomy at 40 was my only choice. My family was complete and I couldn't go on.

Post surgery the pain abated but I never got over my anger at my GP.

Don't let yourself become embittered. Demand second opinions, get onto trial treatment programmes, find specialist centres and get referred.

You are far too young to suffer and deserve better.

Life does get better but you need to be proactive, stand up for yourself! I really wish I had.😜

Good luck, this is your illness, try and own it!

Love Freelander👌

[gremlin0105 in reply to Hidden]

Wow! Is it bad to wish they'd have found something like yours in me? I felt crushed when they told me the little I remember.

Am I able to refer myself to places or does it need to be through the GP? I'm worried about trial treatment as I'm afraid it could affect my fertility.

I have known I've had endometriosis deep within me for years but to finally get a confirmation of sorts has completely left me gobsmacked that I was right.

I'm so overwhelmed by it all my head's a bit of a blur!

[Hidden in reply to gremlin0105]

Right, get yourself to your GP the one you remotely trust. But go armed. Lists of trials and nhs web site has these. Type in endometriosis. I also knew that I had it and it was only when I met my second husband who told me that two tampons plus two sanitary pads for overnight protection was not normal and massive amounts of strong pain relief was also not usual did I realise that I had endo. It was like a miscarriage every month.

take friend of relative and say that you must have a referral to a specialist centre. Look this up on net. Just be really honest and tell them the truth. If you get nowhere change practices. Make yourself obvious and tell them how desperate you actually are.

I ended up in a and e more than once because of pain.

I have absolute faith in you, you deserve not to suffer and specialists will be sympathetic because they deal with endo people everyday and oh yes men get it too!!!😜

[gremlin0105 in reply to Hidden]

You're my new favourite person! You have just given me the kick up the butt I need! I also need to get my "Butt Dr" on the phone as he found nothing to cause my bleeding after every bowel movement. I am going to research the poop out of this and the Dr's won't know what's hit them! xx

[PJK2205 in reply to gremlin0105]

Hi, just try and stay strong and as Freelander says do a little research into specialists. I saw a guy called Mr Phillips in Hull.... I'd been suffering for years before hand. I even had to endure 3 ectopic pregnancies due to endo in my tubes, anyway when I left his office I actually hugged him because I finally felt like my condition was being taken serious. I'm thinking of asking for a re referral as my local gynae consultants just don't seem to have the knowledge re endo... keep pushing until you get the answers you need. x