newly diagnosed i think!!

[cefn25]

hi, i have always had painful periods and mid cycle pain but after numerous trips to the doctors in my teens (in which no real tests were done i might add) i was told that it was just something i had to deal with which would probably go away, so as you can imagine when i fell pregnant at 28 i was excitedly anticipating these lighter and less painful periods, and guess what?? they were worse so i went back to my new doctor who suggested a multitude of tests along with an ultra sound scan.

however whilst waiting for this scan i got the worst pain i have had to date and went to the hospital as i really wasn't sure what was wrong so they did an ultra sound scan there and then and said i had a 4cm endometrioma and that the ovary it's attached to is in the douglas pouch (??? no explanation for this so i was left to research it myself) i was then taken back to the ward to be told i had endometriosis and i was discharged and that my only options are the pill or the depo injection and i should make an appointment with my doctor.

i am really at a loss as to what to do now. i really don't want either the pill or the depo as have had both before and they did not agree with me AT ALL. plus i'm not sure if i should now be asking to see a specialist as when i've googled endometrioma it says they mean i will probably have growths elsewhere

so really after all that waffle i'm just asking for maybe some advice and where i should start and even what i can do to get myself more clued up as at the moment i just feel confused and lost

thank you in advance

xxx

[LeyaC]

Hi cefn25,

First of all, dont worry. You've been blessed enough to have a baby, that is the one part that most of us dont get, no matter how much we try. You may fall pregnant again but that doesn't seem like your worry at the moment.

So, depo and the pill aren't your only options. In fact, you have a lot of options. You can have different forms of contraception like the implant, patches, coil e.t.c or there are injections similar to depo called zoladex and prostap.

Now, you've said you were told after tests and scans that you had Endo but you can't actually be diagnosed unless you've had a laparoscopy so I would suggest getting one by getting referred to a gynaecologist first before getting treatment.

This is all a lot to get your head around but it does get easier. The way to know more about it is just looking on the internet, that's all I have done and I'd say I know more than than most doctors and gynae's. They tend to have a brief idea and that's why they can't help. Have a look around this website and read some stuff, it help a lit and if you need any more info on anything like what Endo is or whatever then just pm me and I can help anytime.

Good luck,

Leya x

[Annetta25]

Have they discussed a laparoscopy with you? An ablation. Are u under a gynaecologist? What pain relief are u taking an what symptoms does the pill an injection give you. I have tried both pills an they do not agree with me. Any questions I might be of help as I've been suffering since the age of 15 an diagnosed in 2009. Also due for another operation soon.

[Hidden]

There is a brilliant book called ENDOMETRIOSIS FOR DUMMIES. This book is so informative without all the heavy jargon.

It will be worth you asking your GP to refer you to an Endo specialist. Here are a list of spec list centres.bsge.org.uk/ec-BSGE-accredi...

I think they will need to do a laparoscopy to determine where the Endo is.

Have you thought about the mirena coil in the meantime? Some ladies have had amazing benefit from it.

Good luck

Barbara x

[cefn25]

thank you all so much for taking the time to reply.

barbara that book sounds great, will def be looking on amazon for that

anetta they really didn't mention anything at the hospital other than go see your gp so i'm guessing thats where i should start.

i've also started a symptom diary as suggested by a friend so hope that will help me explain some of the thing i have going on when i get to see some one

if i have any more questions i will ask. and will let u all know how it goes

[Annetta25 in reply to cefn25]

Yes please please ask your doctor to refer you to your local gynaecologist. Research before hand the hospitals an gynae in your area to maybe suggest to your doctor wen u go. If your experiencing a lot of pain u can be referred to a pain management team in your area an also don't suffer in silence I have tried many medications from my gp an I have found what works for me an what doesn't so if u need any suggestions let me know. Hope this helped x

[cupcakegirl]

Firstly, I would focus on the positives: you've got a child, and you've bee diagnosed without having to have surgery which is incredibly rare (you can only really be diagnosed by scans if you have an endometrioma plus things in strange places which indicates adhesions).

It took me until my second op to be diagnosed - I got a similar line from the gynae, pill or Depo (the devils injection), or if I had another surgery he could remove it all and cure me. I knew he was full of it but agreed to Depo hoping it would help. It was hideous.

Anyway, excision surgery is your best bet and not having any previous laps works in your favour. So I'd have a look for your nearest endo specialist / national referral centre. I went to the John Radcliffe in Oxford. The way I did it was to pay for a private appointment and ask him to put me on his NHS list which he did, and I was treated there for several years. They were fab.

I wouldn't recommend Depo to anyone, but don't give up on the pill completely - I've been on it most of my life since 14, with breaks for other treatments. Some don't agree with me and others are brilliant - and it does help keep my periods controlled and more bearable for long periods with much fewer side effects than other treatments. I've been on all the options now and the pill is the only thing I'll ever have again - zoladex helped me for a while but it took five years to get back to normal after I stopped it. The fact that these other drugs affect our bodies for so long after treatment - my periods took a year to come back after Depo - worries me whereas the pill stops very quickly.

Unless you've had a really serious reaction to the pill I'd recommend trying out a different one - maybe something like Loestrin 20 which is very low dosage.

Good luck with everything x

[cupcakegirl]

Just to add, zoladex and the other GNRH analogue drugs are very different to Depo Provera.

Depo is like a stronger version of the progesterone-only pill. The Mirena coil and implant contain the same hormones as Depo, but at different dosages.

Zoladex is completely different - it tells your brain to switch off your ovaries and puts you into temporary menopause. The usual course for endo is 6 months as this s how long it's licensed for for endo but sometimes people take it for longer - I was on it for two years. Also, it's not a contraceptive and getting pregnant whilst on it is extremely dangerous so you have to use other forms of contraception.

This is a very powerful medication that causes very intense menopausal symptoms. Some people handle the symptoms well, others do not. For me, it helped my fatigue and pain so much that I put up with the side effects and the large needle /implant in my stomach (I am a needlephobic) but after I stopped I continued to have menopause symptoms for five years, especially complete absence of libido. My experience isn't typical but does happen.

I would recommend doing lots if research before starting zoladex or similar, and seeing if you can get away with a milder treatment before trying something so powerful. You may find it helps you, but you may really struggle.

A specialist is best placed to discuss your options with you

x