Hi first time I have been on this site an... - Endometriosis UK

Endometriosis UK

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Hi first time I have been on this site and seems like il be understood.Does anyone else feel like your being made to feel it's in your head?

Becci86 profile image
12 Replies

I have all the symptoms for endo, chronic pelvic pain, heavy periods, can only explain as though my insides are being pulled down etc. I've been in and out of doctors/hospitals for what seems a lifetime been sent away with ibs, trapped gas and basically like I'm making it up. I'm 28 and eventually started getting somewhere last year, they put me on the pill "Yasmin" which helped a little for first 3 months, the next 3 months the pain seemed to get stronger again but I could still plod along plus I didn't want to start the doctor trips again and being spoken to like its in my head. The last 3 months was horrendous like it was back with vengeance and I was constantly on my period for 4 weeks! Eventually went back and was sent to gyno and booked for lap which I had yesterday. When I came round the gyno had left and the nurse couldn't understand his notes, told me a letter will be sent to say what was found and I need to go back in 3 months but assured me if it was anything serious the gyno wouldn't have left without seeing me. As I was high as a kite I agreed and left. Now I just think what the hell? How could I be sent away not knowing anything and expected to wait 2 weeks and kind of feeling like they found nothing! I just want to know the pain will stop and can be normal again especially at work I'm often taking a day or two off around my period which is starting to wear thin with the bosses :( apologies for the essay just seems the only place I can get this off my chest.

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Becci86
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12 Replies
tigergirl profile image
tigergirl

I've met several doctors who have suggested the pain is 'all in my head' over the last year so you're not alone. From reading posts on this site i think its quite common for doctors to fob us off rather than try and get to the root of the problem. Please don't be disheartened though, the trick is to be persistent, if you feel like treatment has not made your situation better then contact the doctor and ask what else can be done. You are well within your rights to ask what went on during the surgery and you should not have been sent on your way without getting this information. I've heard various stories about yasmin but recently I think the general consensus is that it is dangerous to be on it long term so if its not working for you then I would ask your GP for other options. I hope the pain gets better soon and that your surgery helps :) xx

Becci86 profile image
Becci86 in reply to tigergirl

Thankyou for your reply :) I will be phoning my doctors everyday until I have the results. There seems to be so many cases that it's taken years to be taken seriously, what are the doctors issues, It's what they are they for! Did you eventually get seen properly?

tigergirl profile image
tigergirl in reply to Becci86

I've still not had a lap as for some reason the doctors keep putting it off but ive finally got an appointment with a specialist in pelvic pain in 2 weeks - with a bit of luck she'll give surgery the go ahead. I just cant believe that with such a common illness, so many women still struggle to be taken seriously - its ridiculous!

Becci86 profile image
Becci86 in reply to tigergirl

It is ridiculous. I hope you get referred for lap fingers crossed for you. I've since had phone call from gyno saying it was on my endometrium and walls he's lasered it off. It's only took me 2 1/2 years to get seen lol. Good luck x

tigergirl profile image
tigergirl in reply to Becci86

Thanks think I'm just going to have to keep plugging away at the system til someone listen to me. I'm glad you've finally got some answers, sending my best wishes for a speedy recovery x

Becci86 profile image
Becci86 in reply to tigergirl

Thankyou. Definately keep pushing for help and don't let it drop. Hope you get sorted x

vonie profile image
vonie

hi , you have the right to ask for a referral to any doctor you want, I suggest you look for endo centre in your area or go to bupa website and look for gyne, google the names till you find someone you like and ask for a referral to them, the majority of bupa surgeons work on the nhs as their day job but you will get their info there. be strong and don't back down, the only way endo can be seen is by lap or mri . as for pain it can be managed to an extent depending on how severe the endo is , fingers crossed its nothing to bad, its not right the doc left without speaking to you but based on experience the nurse is right and its a good sign that its nothing overly serious, that being said many docs wont attempt surgery on bad endo and that's why finding the right surgeon is so important, don't know how much this helps but good luck to you ad I hope you feel better x

Becci86 profile image
Becci86 in reply to vonie

Hi, yes it does help thanks. I had a call from the doc since I wrote, they found patches of endo and removed it. My ovaries and tubes are healthy which was my main worry. I will be glad to see the back of the pain and also relieved that I don't feel like I'm going crazy and making up my symptoms. Are you in the same boat? X

vonie profile image
vonie

no im a bit worse than you but im really happy for you, im due surgery to remove everything, have severe stage 4, cant even walk without a crutch anymore, its in my spine, attached to my bowel and wrapped all my insides together, its even pulling my left ovary to the right side, by the time docs took me seriously it was years too late that why I said don't back down, I listened to them, felt like a hypocondriac complaining all the time, then I collapsed, took me nearly dying to get diagnosed, and im not exaggerating. learn from my mistakes, you know your body, remember it can come back so if you start to feel the same again in the future deal with it straight away. I wish you all the best x

Becci86 profile image
Becci86 in reply to vonie

Oh my god I'm so sorry to hear that vonie. Actually cried reading that! Stupid doctors!! I can't imagine what your going through. Are you basically ruined for the rest of your life or can they help? X

vonie profile image
vonie

im not sure and neither are they, take it day at a time, appreciate the good days and survive the hard days as best I can. surgery looms in October, if it work then more surgery 6 months later and maybe I get my life back, risks are huge , everything from death to paralasis to kidney failure fun

Becci86 profile image
Becci86 in reply to vonie

Christ, I really can't say how sorry I am. I hope everything goes ok for you i really do. I feel like I'm complaining over a grazed knee compared to you :(

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