Pain and sweats

[Karaj95]

Hey guys,

My name is Kara, I’m 23 years old. I got diagnosed in June with Endo, after collapsing at home. Was under investigation for a whole year, misdiagnosed for IBS until I finally found the real cause of everything. I’ve been on the coil, which made me really unwell, 3 different types of pill contraception. But my pain doesn’t seem to go, constantly in my back and lower abdomen, I had the diagnostic laparoscopy in June and I’m awaiting to see a specialist next month for further discussion. Can anyone help, I’m really struggling with the pain, finding it hard to eat and stomach my food, my bowel changes regularly, I feel down in myself and it does affect my social life, anything would be great x

[kelsbels88]

Oh Kara

Please know that you are not alone. This disease is real challenging to say the least.

Unfortunately it affects everyone differently. I too was misdiagnosed with IbS along with suspected crohns. I ended up practically diagnosing myself and telling my dr that I thought it was endo and wanted to be referred to a gynae for further investigations. I sadly didn’t know I had the disease until my husband and I started trying for a family because like so many other women I was put straight on the pill at 15/16 and for me it helped sadly they put me on a combined pill which also helped the endo to grow so for 12 yrs it helped my pain symptoms but also helped the endo. Now I’m awaiting surgery to have it all removed so that I may finally have children with my husband.

I can’t tell you the amount of times that I had to cancel plans or refused to go anywhere because I didn’t know if I was going to get a pain flare up or need constant visit to the bathroom (which in someone else’s house is not fun) so I just stayed home. In hindsight I wish I had found out sooner but as it is I’m now in my 30s hoping that this condition doesn’t take from me the one thing I want, a family.

I won’t sugar coat it there are horrible,hard, dark days but do you know what there are some pretty amazing days too.

I find for me 500mg cocodamol and 500mg of ibuprofen alternated with hot water bottles and tens machine are enough for me to keep on top of it when I need to. It makes me appreciate the good days when I’m not in pain and live them too the fullest. You will eventually find what works for you sadly it’s just trial and error which I know may not be what you wanted to hear but when you get it right and it works you will get your life back on track.

I keep everything crossed that you get there soon. Any questions just ask and I’ll try to help or even if you just want an ear.

Kelly xx

[Karaj95 in reply to kelsbels88]

I’m so glad I’m not alone, yes I agree with you on that, IBS, crohns, kidney infections the lot they get diagnosing me with. I had the diagnostic surgery and got discharged with a valve infection, so was back in hospital on a IV drip and fluids for a few days because I was so unwell. I’ve been on every pain relief I can think of, certain foods flare my stomach, even just laying on the sofa I get a bad flare up. I do feel like it’s sucked the life out of me, I genuinely don’t know what to do anymore. I have an appointment next month with a specialist so I’m hoping I can get something better, because it does affect my life, I’ve even been at the point where I’m in such a dark hole I just want to let go, because the pain has been unbearable. Hot sweats constantly, just feeling bloated and tender all the time. They did tell me that laser surgery can cause damage to the bowel and make me infertile so obviously that’s a risk, but I just feel none of the pain relief does anything for me. Yeah I was bunged up on co-coda-mol in hospital and it made me constipated and I obviously don’t want to become reliant on them. It affects my relationship with friends. My partner as it breaks her seeing me the way I am, obviously its painful after intercourse and some things I don’t enjoy anymore, I just feel like she’s better off without me. But most days I do feel alone, because it’s so hard to explain how I feel and I just feel like all I do is annoy her😒 I guess it’s hard to explain something that can’t be explained, especially to someone who doesn’t know the feeling. I sure definitely would love a chat, so I feel a bit better! I really hope everything works out for you❤️ I am on the mini pill at the moment as the previous pills and coil made me worse, so I guess I’m on the last thing at the moment xx