Newly Diagnosed

[Mamfyb90]

Hey! I'm new here and wanting to vent about my frustrations to someone who understands, and also have some questions answered.

So my symptoms started about 4-5 years ago when I was around 24. Bloating, pelvic pain, irregular bleeding. Got referred to gynae and got diagnosed as IBS. Assumed this diagnosis was correct, that my irregular bleeding may have been down to the pill I was on (even though I'd been on it for the better part of 10 years and never had ONE irregularity or problem), and changed my pill to desogesterol. I had no symptoms for 3 years..... until this year. Earlier this year I began to have the pelvic pain and irregular bleeding again. At first I didnt read too much into it, thinking it may just be time for a change of pill again. But the symptoms had come back with a vengeance this time and quickly got worse. After having swabs, urine samples, stool samples, ultrasounds etc., I finally saw a consultant gynae a couple of weeks ago who straight away diagnosed me with endometriosis and referred me for a laparoscopy.

I'm frustrated that this wasn't diagnosed sooner and feel fobbed off. I'm worried about my fertility. My work don't seem to appreciate that I'm in pain all the time, and I worry about the symptoms getting worse to the point where I have to take time off. I don't feel my manager appreciates the severity of endometriosis which doesn't make me feel very secure should it come to needing to take time off. I'm also shattered all the time, especially when symptoms are playing up, and it makes it harder to be at work, which I don't think gets acknowledged. I'm really lucky so far, my pain hasn't been crippling. But the last time I had a bleed a couple of weeks ago, I had my first excruciating immobilising pain, just the one. I'm concerned for the next time though which should be soon.

So how do you guys deal with your employers and making a working life easier for you? Can anyone give any advice?

Also I wanted to enquire about symptoms. I seem to get various types of pain in my pelvis - shooting pains, dull aches, cramping, muscle soreness - and my.

pain seems to change from day to day or hour to hour. Is this normal? Additionally for the last week, my cervix seems to have constantly throbbed - it's like having a continuous smear test (yuk!). Does anyone else ever get this?

How does anyone treat their pain. Heat, and over the counter painkillers just don't work for me (I can't take anything codeine based - makes me vomit).

And does anyone get REALLY sore boobs? I mean, excruciatingly painful boobs, where you have to wear a sports bra 24/7? The slightest movement or touch is absolutely awful.

Sorry for my lengthy post. I've been Googling etc. about this for a few weeks and my thoughts have all accumulated. Thank you in advance for your help and answers.

Sam

[Endosucks0]

Hi, I was also fobbed off for 6 years and just recently had my laparoscopy to be told they could not treat it due to it being extensive.

My advice would be do not ever give up on getting it treated. For a while i gave up asking the DRs for help. I got to the point I cried in the GP surgery as it was getting me down.

Most people do not understand the pain and its something that you will get used to dealing with. Speaking with others I learned if it is having an impact on your work you get treated quicker.

Hope this helps and feel free to message with anything x

[Knickknack]

Hi it seems like you are on the right track and have been diagnosed. I wish you the very best for your apt with an endo dr. Make sure he or she is a specialist.

[Hidden]

Hi Sam, I can relate as newly diagnosed this year. They are not even doing a laparoscopy which I am really angry about. I had to defer my masters so not working. Not sure how I could have worked with it. Like you - shooting pains up my vagina, period cramps, itchy, severe bloating and shaking in legs etc. I don’t like pain killers too. I manage it by exercise, acupuncture, cbd oil, rest, diet. It got a lot worse when I eat diary and wheat and sugar.

Last month by boobs were like yours. That is due to too much oestrogen - created from the Endo. Perhaps a letter from your GP to your work explaining it - the pain is worse than labour pain for many so explain that too then. Explain to them you have womb tissue growing outside of your womb in your pelvis. They could be done for discrimination if they try to sack you for being ill with this. Perhaps speak to people so you have the knowledge regarding the situation - then you will feel more confident and assured when speaking with them.

[Somethin]

Hi!

Sorry you are having trouble. I was quite lucky as it only took 3 years for me to get diagnosed. The first time the male doctor spent 5 minutes saying it could be psychological...lol.

In terms of pain, i tend to get really bad crampy pain when my ovaries are. And the pain feels like it radiates down through my cervix and into my groin which is weird. And i get a bad lower back and pain around my cocyx . i end up rocking back and forth in the fetal position. With a hot water bottle on my back and abdomen (if i can gdt the position right). I usually take bunch of paracetamol and ibuprofen but it doesnt tske the pain completely away. Id go back to the docs and see if they can recommend some other sorts of pain killers and maybe talk to the occupational health st your work in regards to the condition.

I find at work if I'm in pain i am constantly clutching my lower abdomen without realising...i guess i find if I put pressure on it, it releives it slightly but then i get asked questions all the time xxxx

[Lynne_support Partner Endometriosis UK]

Hello

I'm sorry to hear you are struggling with your symptoms at the moment. You may find our Endometriosis in the Workplace leaflet helpful endometriosis-uk.org/sites/....

Best wishes

Lynne - Endometriosis UK

[SarahMia227]

In terms of pain, I get lots of different types as well - stabbing, cramping, achey, all at different times! Doesn't seem to be a trigger for each different type.