Frustration Getting Diagnosed

[Alishanne90]

Hi I am 26 years old and have a 5 year old son. I have always suffered very painful periods since the age of 11 when they started. In may 2015 I was referred to gyne who said I didnt have enough symptoms of Endo and they inserted the mirena coil to help with the pain. I had no problems with it in the first year and it seemed to help with the pain each month but during the second year I started to have a lot of irregular bleeding and the pain was back. I am taking Mefenamic acid as well as paracetamol and neither of these are even taking the edge off the pain. I exercise quite regularly too so the doctors are even confused as to why my pain is so bad. My doctor has referred me back to gyne for a laparoscopy to confirm whether or not I do have endo, the waiting list is 12 months long though so I wont be diagnosed for quite some time, its very frustrating! Since that referral two weeks ago though my stomach area has felt really strange I almost feel like I am pregnant again as if something is moving, I have taken numerous test that are all negative and now the doctor thinks I may also have cysts on my ovaries so I am also waiting on bloods and an ultrasound to check that out. Has anyone else experienced this sort of movement?

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No experience of the movements you describe.

But have complete sympathy for you. Its awful having severe pain that no medics can give you an answer for.

I have had many abnormalities in my cycles, suffered unexplained infertility for 5 years 10 months, and suffered chronic pain in my lower left abdominal side for 6 months. I kept a diary and noticed I had developed an allergy to dairy products- I went dairy free which did reduce the number of pain attacks I was getting- my Fertility consultant said there is a link between lactose intolerance and endometriosis.

Fortunately I am under a fertility consultant and unlike my GP he took my pain very seriously and arranged investigations- a scan all clear and a laparoscopy which he found and treated endometriosis from my pouch of Douglas.

12 months seems very long wait- can you ask to be put on a cancellation list? I waited 9 weeks- I was very lucky as my consultant had a cancellation. ( I still had plenty of notice to book time off work etc- they gave me a months notice) As you're suffering in such pain can't they put you forward as a priority? Especially if it's having a negative impact in your life, I know mine was - just doing my daily activities was such a struggle. I thought there was a maximum waiting NHS time of 18 from being referred to getting treatment?

I don't know why it's so difficult for the medical profession to diagnose us ladies with endometriosis- something needs addressing. I don't know why we have to suffer for so long till we get diagnosed.

I hope you this sorted out soon and you're pain free soon - it grinds you down. xoxo

[katiebaldwin]

hi,

I have endometriosis and was crying in pain, i went to A&E and was admitted on to a ward from there the Gynae team arranged for me to have a Laparoscopy it was the next day.

i suggest that if you are in pain to do the same thing as the waiting list is 12 months and for pain this severe is too long of a wait.

xx