Do I have Endometriosis? Help!

[lauradee90]

Hi, first time posting anything like this but really stuck on what to do.... I am a 23 year old with two young children. I work full time, which is proving to be difficult because of this pain! I have had pain in my lower left side since the birth of my 2nd son, which was 2 and a half years ago. At times, it is excruciating, and I'm unable to go into work. I have always had heavy periods since I started them back when I was 12 yrs old and cramp pain has always been an issue. This acute pain has always been there, but has been background rather than prominent. now, it is completely ruling my life. 2 years on after going to the doctors every other week I have had almost everything to rule out other possibilities. I have had scans which at first showed I have a cyst on my left ovary which was 2cm. they said this was nothing to worry about and sad the pain was down to this. After another month of agonising pain, I returned to my GP who sent me for a further scan. This showed the cyst had gone, so the pain could not be caused by this. I have seen a gynaecologist who suggested to go on Zoladex for 6 months. I tried this for 3, which did in fact decrease my pain but side effects were horrendous. Since then, my doctor has put me on Cerelle for 6 weeks to see if this helps. I have had no actual diagnosis and feel as though they just keep filling me with drugs but i'm not actually getting anywhere. The gynaecologist said they would give me a laparoscopy as they do suspect endo, but as I am overweight they suggested I tried zoladex first to rule out any other condition. This has in turn made me gain more weight which is a vicious circle! I just want to know what is wrong with me! Has anyone had the same experience? I would be grateful for any advice as I am completely drained from it all thanks x

[Hidden]

It is possible you could have endo as your symptoms sound very much like what I had.

After years of horrendous pain & heavy periods I had a diagnostic lap in 2006 - I was told I had stage 4 endo and cysts. I had 6 months of zoladex and got my gp to refer to a hospital where a consultant specialised in endo ( I had no confidence & awful experience with previous Gynea ) . In 2007 I had laser excision and Surgey.

You can only be diagnosed via a laparoscopy - I would suggest asking your gp to refer you to a Gynea that specialises in endo. X

[lauradee90 in reply to Hidden]

Thanks for the reply, much appreciated. I seem to have all the symptoms that are on websites etc but its getting a diagnosis that seems to be the issue! They are so reluctant to investigate, probably because of cost but I don't think they understand the impact it is having on daily life! I will talk to GP once my Cerelle course is complete and see if they can refer me to specialist in Endo. Did it take you long to get a laparoscopy and did you have to fight for one or was it offered? This has been going on for 2 years now Thanks x

[beau5 in reply to lauradee90]

Ask and keep on asking, if that doesn't work explain that you will keep coming back until something is sorted, it has taken me over 4 years to get one as i was fobbed of with muscle spasms and Ibs, i was given ultrasounds which showed nothing , i wish now that i would of pushed for it a lot sooner.x

[Hidden]

I was lucky that my gp was good , it took a while to get a diagnostic lap and even then when I had stage 4 the local Gynea didn't really want to do anything - my gp and I fought and got referred to the endo specialist - the difference in treatment was staggering!

[Yazza]

Hi ladies I've had similar story I was going to my gp with pain in pelvic area since 2011 finally got a diagnostic lap last June the gyni found my left ovary was stuck to my pelvic wall which he mobilized.. And said there was a small amount of endo which I believe he didn't treat less than 1 year on I'm in agony and it's affecting every aspect of my life and making me unbearable to live with! But reading some threads on hear I have now discovered that there are specialist endo centres which i am now going to insist on as I don't feel my consultant is able to do whats needed.. Just remember you are not alone and you are entitled to chose where and when your treated. X

[beau5]

Hi, i have similar symptoms and it got much worse 4 years ago when my youngest was 2 1/2 yrs old,since then i have been back and forth to my Dr and have been in A&E a few times,last year i was sent home from A&E being told it is probably female problem's 3 days later was rushed in with a bad infection from this, i spent 3 days on a drip and spent 2 weeks in bed! The gynaecologist suggested i try Zoladex and that if it worked i probably had Endo but i refused unless i new for sure, i was offered one a few months later with only a days notice and endo was found and 1 ovary had lots of it however nothing was done as The gynae who performed it did not think i had it which is why i was only given a day's notice, at least i know for sure i have it and i was thinking about taking Zoladex as it is tempting to feel no pelvic pain for once but as it will not be a cure i don't see the point, it is so bloody confusing and i feel like my body has gone haywire!

[Yazza]

I know that feeling just don't know what to do for the best very frustrating and confusing! X

[beau5 in reply to Yazza]

What i find hard is the fact the pain seems to move around and it makes it so hard to plan anything! i always use my hot water bottle.

[lauradee90]

Thanks for the replies, it's good to know people are in the same situation as me! At times I do feel alone, even though I have a fantastic partner who understands its just so frustrating! Beau5, same situation with the Zoladex, they said to have injections and if pain was reduced chances are I have endo. They did stop pain which was great but side effects were awful, but still no further forward. They keep saying as I am overweight the risks are higher which I understand, but surely this cant stop them from investigating? They don't realise that all this different medication they are giving me to try has side effects of putting on weight! even going to aquafit twice a week, spinning once a week and healthy eating I have been gaining around 1lb per week. My body is completely messed up, my period started last night and its come back with a vengeance! I am rushed off my feet wearing maternity pads and the pain is unbearable especially in my left side - yet another day off work. How would I suggest to my GP about having a specialist in endo? will they not fob me off by saying I need to be diagnosed first? Thanks Ladies, really appreciate your help xx

[beau5]

lauradee90, i know how frustrating it is to having to keep on at them to do anything, 9 month's before my lap i had got that infection from burst cyst and spent 3 day's on a drip i was the sent home on antibiotics- ciprofloxin which i was allergic to they caused my heart to race and blistered my mouth and could not sleep for 4 days ,it was then my husband took me back to the hospital where i was sent to the gyne ward, i could hardly function due to not sleeping. I was then asked if i had any problems or stresses at home!! and that if it would help they would send someone to come and talk to me, surely enough 2 women called into the ward and i kindly sent them on their way! It was the same dr that arranged the Lap just to rule out endometriosis. He then came around to tell me that it wasn't all in my head and that i did indeed have endometriosis and that he had seen worse but i also had adhesions on the outer bowel which according to him weren't part of the same problem! I did tell him straight though and the whole experience has taught me that you don't have to accept their opinions/views after all most are men who will never experience anything near to this.I don't fully believe that weight comes into all this,i am 5'6 and 9 stone 10 but with the exercise you do you could be much fitter than i am.Where i live there are no endo specialists just dr's who want to fit you in to the hormone clinic!