Struggling..

[LaurenGooch23]

Hello, I've just joined and wanted to introduce myself with my story:

I'm Lauren, 22 and ive been struggling since the day I started my periods! I've always had heavy periods and I was always told it was 'normal' but deep down I knew it wasn't! I used to take weeks off of school just to get through my period, changing my pad every 20 - 30 minutes (and still do to this day). I constantly went back to the doctors in tears asking them to help. I was put on various birth control pills to regulate my periods but nothing worked. I was in constant agonising pain! I had some scans and it showed I had an ovarian cyst on my left ovary - a dermoid cyst.. I had it removed and then the pain and heavy periods returned! another scan, another cyst, same again.. after the 2nd cyst was removed the pain and bleeding came back and I was then told I had some bad adhesions so had more surgery to sort these out.. after this, surprise, surprise the pain came back but even worse! I had multiple stays in hospital, lots of appointments and scans! nothing was seen on my scans so we decided to do more surgery to have a look around to see if anything was un- detected, like a hidden cyst or something.. when waking up from surgery, I heard the surgeon say 'you have endometriosis'.. at this point, myself, my mum and my boyfriend had no clue as to what endometriosis was! when I was fully recovered we started some treatments.. I tried some other birth control pills which didn't work, I had zoladex which did help but I couldn't take it for too long because of other side effects.. typical!

My pain started to increase again so I went back to hospital, had a scan and there was another cyst on my left ovary (they've always been on my left ovary). We decided at this point, because the ovarian cysts kept coming back, to remove my left ovary! as heart breaking as that was, especially at 20 years old, it was the best thing to do! So my 5th surgery was them removing the ovary and any more endometriosis that they could detect!

When I was recovered, my pain came back, they just put it down to the endometriosis.. we started more treatments.. I had another dose of zoladex but with HRT this time - hated it! then we tried the mirena coil..the l first one made me bleed for 12 weeks and then it fell out - 2nd one made me bleed for 9 weeks and then started to fall out and was very uncomfortable! it wasn't for me.

That brings me to now.. I've just tried Provera 3x a day! I took it for about a month and a half - I felt sick every day and my pain was getting worse. I'm now off of that and currently trying to control my pain with pain killers.. I've had a referral back to gynecology to talk about my next options, whether that be more surgery (which they haven't done in a good few years) to see what the endometriosis is like and remove whatever they can and then start some new treatment or just talk about other treatment options!

I feel like I'm at a dead end with treatment and I'm struggling to find the best one for me! I'm currently off work with a bad flare up today 😫 I've missed my teenage years being in bed in agony or in hospital. thank you for reading and listening to my story, best wishes to you all xx

[LaurenGooch23]

forgot to add that I currently have a hemorrhagic cyst on my right ovary at 3cm and always worry about it! I don't know how much it's contributing to my pain or if it's just my endometriosis! does anyone else have this or have had trouble with one? xx

[KSvedenmacher]

Were you seen by a general gynaecologist or at a BSGE clinic? It sounds to me that you were not at a BSGE clinic, in which case, try to get a referral. Your GP can do it or your general gynae. They can really treat endometriosis well at a BSGE clinic - they excise all the endometriosis they can find which should give you the relief you need. It may still come back, but if you have a good BSGE consultant he should be able to remove it all.

[JeanOsborne]

Hi . You really need to get a referral to a BSGE centre. The gynaecologist you have been seeing has broken nhs guidelines in the fact that Zoladex should not be given to anyone under the age of 23, due to the fact it can cause loss of bone density.

General gynaecologists tend to miss endo as many of them don't look further than the reproductive organs. It really does sound like you have endo that is being missed every time you have surgery. Please get that referral. With the right surgeon you could be pain free for many years to come and possibly forever. Search on here for a lady called Lindle and have a look at her posts on treatment pathways and how to get a referral.

Good luck.

Just seen that Lindle has responded.

Please listen to her advise.

[Hopeful82]

Sorry to hear of your sad struggles. Although my story is a lot shorter , about a year, I too feel nothing is actually getting this awful disease under control.

Healing hugs

Kate x x

[Hopeful82]

Hi lindle

Did you receive my message the other day? I know you get lots of messages so no rush just wanted to know if you received it as I know there has been some technical issues on this site recently.

[LaurenGooch23]

I don't have a regular cycle, I can go months without bleeding and then be bleeding for months straight.. my pain is constant! and is obviously worse when it flares up which can leave me in bed for a week! the pain is crippling, it feels like someone is pulling my insides around, squeezing them, twisting.. stabbing! I'm always tired, especially after a flare up which I quite regular! x

[LaurenGooch23]

when I was diagnosed it was around the back of my womb and on my ovaries and when I had my left ovary removed it was blocking my tube so they removed that too!

I'm in Wiltshire so I go to Salisbury Hospital. I'm under Dr verdin.. he does my surgeries too xx

[LaurenGooch23]

yes to the lower back pain! the pain goes to my thighs but not all the way down my legs.. and my pain worsens after sex.. during isn't too bad xx