My Story

Hey, I’m Katy and I was diagnosed with Endometriosis in 2012 (age 32) after suffering with horrendous period pain and many more symptoms since I was 11 years old. That’s 21 years of pain and asking for help, but never being listened to.

My period first started when I was 11 and oh my did it hurt, but I was told it was normal. I started going to the doctors when I was about 12 to ask for help but was told to take Paracetamol & Ibuprofen, they didn’t really do anything (no surprises there!). So I kept going back and was given a stronger version of Ibuprofen…again…wait for it….it didn’t really do anything!! I was finally put on the pill when I was 14, it would help for about 6 months but then my symptoms would start to get worse again, it felt like a vicious circle of me going on the pill, coming off to have a break & going back on it. I developed Sciatica when I was 15 (little did I know that it was a sub-symptom of Endo) and I was constantly fobbed off and was told by a specialist that it was in my head! Then after years of problems with my bowels (diarrhea, constipation, bloating, wind, nausea & random food intolerances) I was diagnosed with IBS when I was 30.

My symptoms were just getting worse and worse and I was really fed up of being told by doctors that ‘it’s just a bad period, it’s normal’….BAD PERIOD PAINS ARE NOT NORMAL!! I eventually broke down in a doctors office and they finally referred me to a Gynaecologist, I think the fact that we had been trying to conceive for a couple of years without success helped me to get the referral. Well, whatever the reason, I finally felt like I was getting somewhere.

The Gynae that I saw wasn’t so great, I could tell that she didn’t really believe me but reluctantly she agreed to a laparoscopy. A few months before my surgery was due to take place I had a letter to say that I was having my surgery at a different hospital and with a different surgeon…Luckily my surgeon turned out to be an Endometriosis Specialist Gynecologist, so I was in good hands! On the ward after my surgery I saw the gynaecologist that I had initially seen & she told me the news…YOU HAVE ENDOMETRIOSIS. I felt so relived to finally have an answer…I wasn’t going mad!! I was also secretly happy that I’d proved the gynae wrong, she said that if she had completed the surgery then I would have had to come back to the Endo Specialist for further surgery anyway due to the amount and the location of part of it being near my bowel. To be honest I didn’t really understand Endometriosis when I got the diagnosis, nobody explained it to me and I wasn’t given any advice, leaflets or support by the medical team. I did however have a follow up consultation about 6 months post op with my Endo Specialist Gynae, he was really informative and supportive but by this point I’d done all the research I could and learnt as much as I could about the disease and how it could potentially impact my life….to be honest I had no idea that it would get as bad as it has.

After my first laparoscopy my Sciatic pain & IBS symptoms really calmed down – but both have reared their ugly heads again since!! Over time I’ve also experienced brain fog, symptoms of cystitis, ovulation pains, random patches of sore skin, aching/weak hands, heavy legs, chronic fatigue, anxiety & depression….oh and lets not forget the dreaded Endo Belly!

I’ve had four Laparoscopies in total, my last one was on 31st October 2019, where underwent a Total Hysterectomy & Bilateral Salpingo Oopherectomy (removal of both ovaries). Sadly, I wasn’t able to have children before my Hysterectomy, I underwent 4 rounds of IVF between 2014-2016 but each one failed. I know that a hysterectomy isn’t a cure for Endo but it has at least ended my period and ovulation pains, unfortunately I’ve been left with nerve damage and I’m currently awaiting an abdominal nerve blocking injection and investigations into issues with my bladder – I’ll add a blog about this when I get some answers

I’ve felt very alone during my fight with this disease so I created Endo Buddies to try and end some of the isolation associated with it and let others know that they are not alone. A part of Endo Buddies is giving self care packages to women who have undergone surgery for Endometriosis – surgery and recovery can be hard & lonely, so a lovely little package with treats based around self care & some information about Endo & support should hopefully make it a little bit more bearable. I make the self care packages thanks to generous donations from the public – to learn more click here.

So that’s a little bit about me but I’ll be going into more detail in my blog posts.

Sending gentle hugs your way.

Take care, Katy x

P.S. If you want to reach out to me then please complete the contact form below & I will get back to you as soon as possible. You can also contact other members of the Endo Community Here.

“At the end of the day, we can all endure much more than we think we can.”

Frida Kahlo

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