New and could really do with some advice.....

[Terrapin78]

Hi, I am new to this community but really happy I have found it as I need to talk to people who are experiencing the same difficulties.

I recently of diagnosed with endo after a life time of strange, erratic periods, a miscarriage when I was 19............I am now 37, have an 11 yo and the past 4 yrs of my life things have got a lot worse with excruciating pain (similar to labour) erratic periods, mood swings joint with energy highs/lows and fatigue and extreme anxiety coupled with low moods and painful bowel movements withblood and migraines - I am sure many people on here have had all this??

I have seen a gynaecologist who confirmed a cyst on my left endo and can feel nodules on my vaginal wall indicating my bowel has been affected. Just waiting for a surgery date and I am hoping this is gonna change things for me....??i hope.......

I have been noriday for 3 months which has helped the pain go from excruciating stabbing to a bearable dull pain. However, the last month I have had 3 periods which has taken all my energy making it difficult for me to function. I have been working mornings only so I can go home and rest. I am really struggling with the fatigue so much that it makes me worry thinking could this be ovarian cancer...? How can they tell its endo without doing a laparoscopy? My ca 125 was high but then it would be if it was endo anyway?..... Perhaps I a,being paranoid.......

Does surgery help fatigue? Will things get better?

Feeling lost and desperate.....?? 😞

[Terrapin78]

Wow thanks for your extensive reply. Have to say I am new to all this so don't know much at all!!'

I don't know about bgse but have been told that endo is my consultants speciality so he must be accredited......

I didn't know there are stages of endo....? And how can you tell if I am stage 4 or not? Really don't understand it all.

All I know if that I have suffered for years and only recently got a diagnosis. When I had a scan it showed up a cyst on my left ovary but it's my bowel I believe that has most of the endo and I think that cause of the pain. And fatigue is another thing.

The reason I was worried about cancer is because I feel so ill , up and down, bouts of fatigue pain etc and now specialist has really reassure me that this is normal for endo. When I read about symptoms on nhs website it does not describe how extensive my symptoms are,! I guess this is probably due to the lack of awareness.

I will have a look at your link lindle and hopefully it will give me z better insight in what's happening. Just feel so alone and lost.

I have felt weak and pathetic for years and it's has stopped me enjoying my life to the full. I also suffer anxiety which flashes it's ugly head before a period.

Thanks again

[Terrapin78]

Thanks for your reply. I see what you mean and get how I must be at stage 4 level due to my symptoms. It's really interesting to know the staging levels as I met one person with endo who was symptom free and I could not understand our experiences differed so much! Last month I had 3 periods and my fatigued and mental health symptoms peaked massively. I was lucky that I was doing reduced hours and had only worked 4 hrs a day then after I could sleep. Because of my highs and lows I have been put on quentapien from the psychiatrist which is to help my moods and anxiety - wonder if my mental health is actually due to endo? And if so will this medication work....

I am awaiting survey date for lap ablation and have asked to have it before sept as I start uni and need to be well for my placements. If I found a bgse I am worried that I will not have the surgery in time. I don't know whether waiting or not would be a better idea considering I have uni to start in sept.......? Any ideas...?

I a, so thankful I have found this group and for the information you have provided me it means so much. I have been going round in circles alone feeling I am a hyperchondriac just because no one else seemed to understand. Endo is so up and down with its flares, guess that's why it's a chronic condition..x