I’m an 18 year old girl very scared for what my future holds. At the age of 14 I started my periods and struggled very bad with them for a long time, I went to see the doctor and they put me on the Yasmin pill. This pill worked really well for me and decreased the amount of pain from my periods and how heavy they were. I then started struggling with stomach pains and constipation at the age of 16, I was diagnosed with IBS. Since then I’ve always been very tired and seem to get ill quickly, I also had many kidney infections and I was sent for an ultra-sound of which they picked nothing up. During this time I also became depressed due to feeling ill and missing lots of sixth form.
Then in December of 2011 I lost half of the sight in my left eye for around 20 minutes I was sent to A&E, they blamed it on my new tablets and stress. I then went to the doctors about this being worried as to why it happened, she straight away said I need to change my pill and put me on a pill with just one hormone rather than two. This pill has really messed my periods up and have only had one period since January. I have just recently been to the doctors with shooting pains in my back and stomach whenever I need the toilet and sometimes bleeding out of both ends, constantly tired and dizzy. The doctor then questioned if I was pregnant, she sent me to do a urine sample and found that I wasn't pregnant but did have glucose in my wee. She also sent me to the hospital for an ultra sound, when I was having this ultrasound the lady asked me if I had been having problems with my periods, she told me she has found quite a few cysts on both of my ovaries and needed to do an internal examination. I went ahead with this and was told I would receive more information the following day as the doctor needed to look at them. I heard nothing the next day.
A couple of days later I went to see my GP again for blood tests, she then told me the hospital had been in contact with her and gave her instructions to inform me that they think I may have endometriosis, however, she also informed me that as they are lumps they could be tumours. From this I have been given an emergency appointment for more tests at the hospital with the gynaecologist tomorrow (the 23rd). I was also diagnosed with an under-active thyroid, I also did a fasting blood test with regards to the glucose in my urine and that came back normal.
I am suffering badly with back pain, stomach pain, tiredness, mood-swings and generally feeling rubbish!
I feel completely lost, scared and depressed. I'm only 18 and this is all very daunting for me and whilst I have a great supportive family I don't actually know anyone else who suffers from endometriosis or anyone with symptoms like mine! I just keep on thinking it’s only tomorrow until I undergo further tests and trying to keep positive. Any help for me would be greatly welcomed, including how to cope with back pain as this is getting unbearable and normal painkillers are not doing anything!
27TH March - Update
Hi there,
It went ok, the gynaecologist said there is still a chance it could be endo but they are wanting to look in to it more and also repeated what i had been told about tumors. I then went for blood tests to check hormone levels and for protein in the blood. Further too this she booked me in for an emergency MRI scan which i had yesterday morning and have had another appointment booked for 13th April, they wanted me in sooner but it would fall on good Friday, which my consultant will not be in so i decided to go in at a later time to stay with the same consultant instead of having to swap consultants and explain everything again!
Thankyou for asking!
Georga xx
7TH April - Update
So, i had my MRI scans and was hoping everything was going to be okay and was hoping not to here anything until my next appointment (13th April) However, on the 5th i had a phone call to go in to see my gynaecologist that day. When i got there she told me i had unusual high protein in my blood with the normal level being 30 and i have a level 291. Further more, they have now decided that i dont actually have cysts on both of my ovaries (what they thought i had from my ultrasound and internal), but my MRI showed a 9cm cyst completely covering my left ovary, i am now going for a CT scan on Tuesday (10th) so they can determine if it is coming out or growing around my ovary.
My gynaecologist came especially to the clinic to see me that day which i am extremely grateful for, she also told me that they are now thinking more along the lines of a tumor but can not be 100% certain so i have had 3 more blood tests to check the different proteins in my blood and the individual levels.
As they are now thinking about surgery for me i am now seeing a different gynaecologist who i saw briefly that day too, who said she still thinks that it could be endometriosis as well. I am not sure if she was trying to stop me from worrying because she then said "It's probably going to be something silly" I am now completely confused, i have gone from one person telling me the likely hood is a tumor and that my protein is high to another person saying its probably something silly!
My new gynaecologist is calling me as soon as she gets my CT scans through and my new blood tests and i will hopefully know something more then!
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Georga
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Hi... Sorry to here your having a bad time your symptoms do sound like endo,gyni doc will prob do a laparoscopy to confirm this as only way to see where endo is. Ibs is always mentioned when us ladies suffer these symptoms but nearly always turns out to be endo as pain are simular.
There are a few treatments that could help with your pain... This may invole laser to burn away worst of endo...
The pain is bad because endo grows its own blood supply and nerves and these swell and bleed and attach to your pelvic area,bladder,bowel etc!!!
Again gyni should offer you better pain relief..
My advise to just keep pestering to get a diognosis and them go from there..
It went ok, the gynaecologist said there is still a chance it could be endo but they are wanting to look in to it more and also repeated what i had been told about tumors. I then went for blood tests to check hormone levels and for protein in the blood. Further too this she booked me in for an emergency MRI scan which i had yesterday morning and have had another appointment booked for 13th April, they wanted me in sooner but it would fall on good Friday, which my consultant will not be in so i decided to go in at a later time to stay with the same consultant instead of having to swap consultants and explain everything again!
Sorry to hear your problems. From what I've read I'd strongly recommend you ask your GP for a blood test for coeliac disease. I suffered on and off painful periods and am now being treated for Endo. Yet I also had some on and off stomach problems and thrush and urine infections. I felt tired all the time and dizzy and would sleep from 6pm till 6am. Eventually I saw a Dr who realised that with a strong family history & my symptoms that he should test for coeliac disease. And voila I was positive. It runs in families so I got my sister who was always ill tested and she also has it. I'd really recommend asking for the blood test as Drs often miss it and it can take an average of ten years until someone is correctly diagnosed.
Common symptoms of coeliac are tiredness & bowel problems. It's an auto-immune disease (like thyroid) and can be tested by a blood test. Then treatment is a lifelong gluten free diet. Which is easy once you get used to it. Often coeliacs also have very low blood test scores for iron, folate, B12 and vitamin D. So if these are also low for you your Dr needs to find a cause - often it's coeliac. People with thyroid often get coeliac too.
I was tested for ceoliacs before i was diagnosed with IBS , although all the symptoms do seem to match it came back negative. The doctors did another blood test and have told me that i have low iron and low vitamin b12 but nothing more has been said about it. Can coeliac's develop at any time? If so i might as the doctors to do another test for that as the information you have given me seems to add up!
Oooh and my mum is anaemic, my auntie has very low b12 and my cousin has ceoliac's, not sure if this is any help for me but like you said it runs in familys!
My story sounds very similar to yours from such a young age too! I have been through all the same things and now more. They told me I had tumours also and they ended up doing various tests and I am still going through the process now. I have been diagnosed with severe endo and I can't believe it really! It really does get you down with all the trips to specialists/hospitals/gps and you just feel like you get passed from pillar to post but hang in there and I am sure you will get some good news soon
Hey, thanks for the support, makes me feel better that im not the only one thats been effected at such a young age. To further my story, i went for my MRI last Monday and got a call from the hospital today saying that my gynaecologist wants to see me as soon as possible, so going to the hospital again at 2 today! this has scared me to death as the last thing she said to me is we won't get you in any quicker than your next appointment unless there is something wrong. She says she needs to conduct more tests, i'm not sure what more tests i can have at this stage! I have had the ultrasound, internal examination and MRI, what else could she need?! haha, anyway i'll update soon with what they have or have not found!
So, i had my MRI scans and was hoping everything was going to be okay and was hoping not to here anything until my next appointment (13th April) However, on the 5th i had a phone call to go in to see my gynaecologist that day. When i got there she told me i had unusual high protein in my blood with the normal level being 30 and i have a level 291. Further more, they have now decided that i dont actually have cysts on both of my ovaries (what they thought i had from my ultrasound and internal), but my MRI showed a 9cm cyst completely covering my left ovary, i am now going for a CT scan on Tuesday (10th) so they can determine if it is coming out or growing around my ovary.
My gynaecologist came especially to the clinic to see me that day which i am extremely grateful for, she also told me that they are now thinking more along the lines of a tumor but can not be 100% certain so i have had 3 more blood tests to check the different proteins in my blood and the individual levels.
As they are now thinking about surgery for me i am now seeing a different gynaecologist who i saw briefly that day too, who said she still thinks that it could be endometriosis as well. I am not sure if she was trying to stop me from worrying because she then said "It's probably going to be something silly" I am now completely confused, i have gone from one person telling me the likely hood is a tumor and that my protein is high to another person saying its probably something silly!
My new gynaecologist is calling me as soon as she gets my CT scans through and my new blood tests and i will hopefully know something more then!
Hi, i know i have been very grateful for how fast they are moving everything. I had my CT scan and my further blood tests and received a phone call on Thursday to make another appointment with my new gynaecologist. I didn't think anything more about it until i got the letter through and it said i was now seeing the gynaecological oncologist, this scares the hell out of me. So far i have been okay with all of this knowing that they will be able to sort it but now i feel like i am waiting forever for this appointment to come around. I didn't know what an oncologist was at first but now, i know, that it is a person that deals with cancer. I hope so much that this isn't cancer but i can't help thinking 'what if?'...
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your symptoms do sound like endo,gyni doc will prob do a laparoscopy to confirm this as only way to see where endo is. Ibs is always mentioned when us ladies suffer these symptoms but nearly always turns out to be endo as pain are simular. 
Any advice please: Could I possibly have endo?
Follow up post about Possible Endo? 
Possible Endo / Adeno? 
recovery from endo surgery - reassurance if possible!
Possible bowel endo?
