Inverness woman with endometriosis is misdiagnosed for 20-years

Highland News & Media

Aleksandra suffered in agony for 20-years before she was diagnosed with endometriosis.

Transcript

00:00 I'm Aleksandra Czajsaklacka. I was diagnosed in the beginning of 2017 and it was actually

00:08 around 20 years after I had my first symptoms.

00:11 So it took a long time. My first symptoms started when I got my first period and it was around

00:30 when I was 10 years old and it was like I experienced such a huge pain in the abdominal.

00:38 Like you know trying to imagine like somebody's constantly stabbing you and trying to cut you open.

00:45 I was very bloated so I looked like you know as pregnant and I was very heavily

00:53 bleeding and it was you know I was at the age of 10 so I didn't know anyone in that age like

01:02 similar to me to experience things like that so it was also like you know challenging for

01:07 little girl to deal with that and I was ending up in the hospital so many times that I can't even

01:15 remember but constantly they couldn't find anything so they were blaming my you know mental

01:22 health or something like saying that because we can't see anything on the scans it means that it

01:27 must be in your head.

01:41 So it was challenging and yeah and was affecting my social life as well because in many cases when

01:47 I was in pain I couldn't go out and it was hard to explain other people because everyone was like

01:55 oh but it's just a period pain so why making it so difficult and challenging for you we also have

02:03 the period pain and it was and because I didn't know that this condition I have I was thinking

02:10 maybe I'm this is it like maybe I'm so weak like my body's so weak that I'm experience this period

02:17 pain you know and extravagating something you know so I started somehow thinking okay I need

02:24 to deal with that so I was just like pushing myself more and at some point I think my body

02:30 somehow got used to the level of the pain so you know the pain level just went further so I was

02:40 like yeah pushing myself doing everything through the pain or getting like painkillers and things

02:45 like that although now because of taking those like painkillers for some long time my stomach

02:54 is so affected that now I actually can't take anything stronger than paracetamol so it's tricky

03:00 to deal with that you know because at some point you realize that you're alone with that like

03:06 everyone saying that it's in your head nobody want to treat it because they don't know what's

03:10 treating so you started to look you know for the ways to deal with the pain like natural things

03:17 so yeah and it was tricky also for my career I was lucky that at some point I have very

03:24 understanding employers in Poland there was a few times that I was taken by ambulance from

03:31 workplace and it was also challenging and having my laptop working from the hospital but I was

03:38 pushing myself more and more to prove that okay sometimes I need to be taken to the hospital

03:44 sometimes I need to take time off but then I was working even harder to make up for that my pain

03:51 was getting worse and worse to the point I was not actually able to walk and I remember when I

03:58 was in the re-kitting I end up seeing GP and she was very lovely like older lady and the first thing

04:06 she asked me was if have ever if you ever was diagnosed or try to be diagnosed and look if you

04:13 don't have endometriosis and I was like first of all shocked because I've never ever heard about

04:19 that and then before I knew what it's actually I was so relieved and started to be so happy that

04:26 finally maybe somebody found the answer what's going on with me

04:30 so then I was sent to have laparoscopy and yeah it shows that I have endometriosis the doctor

04:51 stopped saying to me that I'm crazy that's like I have a name for the condition so I wasn't making

04:57 this up but then you know other side of the story is that I realized that it's something that can't

05:06 be cured because at some point you still have hope that okay you will have diagnosed you will be

05:11 treated everything will be fine there's a cure there's operations gone but with this condition

05:16 it was also challenging to mentally proceed with information okay you have this we can do

05:24 laparoscopy to remove something but it's the lifetime condition so it will coming back there

05:30 will be symptoms different things and you can start getting more other like illnesses and things

05:40 behind that so it was really challenging moment for me because it was also I just moved to the

05:47 new country I didn't know anyone and I was so grateful that I actually find some support groups

05:54 and it's so amazing that in Scotland there's like in every region there's a support groups

05:59 for endometriosis women because even having the treatment from the doctors is just like okay

06:05 they provide the operation they give you some pills or something and you are left alone with

06:10 the information yeah from now on you'll be living in pain. At some point I was in a time that I was

06:18 24 hours in so much pain that at some point it was so bad I even asked my husband to like do something

06:25 and I was begging him like please help me because there's no nothing there you can't go just go

06:33 there and get help because even mental health I was trying to get a psychologist and I was just

06:40 told that here's the form for pain clinic fill it in and you'll get some psychological support

06:48 from this like in a few years so now most of the time if I need this help I need to go to central

06:56 belt and it's so like I sometimes like I love living in the highlands but I think that the

07:06 medical help like it's actually somehow close to non-existing for women here and to have this

07:15 knowledge about how tricky it is especially for women further in the north like I live in Inverness

07:22 so yeah there's hospital here so at least I don't need to drive if it's emergency

07:28 but women living with these conditions in north of Scotland like driving few hours to to Rigmor

07:36 and you never know if you will have a good treatment or good diagnosis because in my case

07:42 when I was that misdiagnosed it was like very at the stage that I was in so much pain that my husband

07:49 needed to take me to Edinburgh like crawling from the pain in the car so it shouldn't be like that

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