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endometriosis

(12 Posts)
sugarpear Mon 08-Sep-08 17:50:36

I hate it its friggin agony! sad

The pain is with me every frigggin day. And it can get very intense that i just want to cut myself open and rip my insides out!!

My consultant has been fab.

His got me an urgent scan for tomorrow night. And im not ungrateful but i am bricking it. Its an internal scan and i just know its gonna hurt like hell!! My poor dh has forgooton what sex is its so painfull.

but doc needs to know where it all is so he knows if he can get away with doing it by keyhole or he will have to open up my old scarring. But problem is my scar is actually 5 ols scars. 4 c-sections and endometriosis cysts removed 7 years back.

Every top notch pain killer he prescribes makes me sick. And i really dont fancy the hormone implants. Commin side effects are all the symptons of the menopause and your voice can change. Do not want to talk gruff grin

Am going to beg the sonographer tp be extra gently with me. Failing that to get me some super duper drugs! wink

emma1977 Mon 08-Sep-08 17:57:40

Endometriosis really is shit- you ahve my sympathies.

No practical advice, but I hope tomorrow goes OK for you (pop a couple of painkillers an hour before).

babbi Mon 08-Sep-08 21:11:48

I am so sorry , I hope they can help you.
Make sure you emphasise how much it hurts beforeheand as each sufferer is sore in different areas just to make sure sonographer knows to go easy ..

Good luck - take care.

Mine was taken away by Denorex injections monthly for 6 months . It has never come back - more than 10 years now .

nauseous Mon 08-Sep-08 21:48:10

Hi sugarpear you sound in a realy bad way. I had moderate endo but taking the pill back to back for a few years gave 100% pain relief. Sounds like yours is more hardcore though. Good luck.

sugarpear Tue 09-Sep-08 07:02:24

Thankyou.

I just want it all out of me and to have a normal life again!!

AttilaTheMeerkat Tue 09-Sep-08 09:06:11

sugarpear

You have my sympathies speaking as a fellow endometriosis sufferer. Its a PITA to have if you pardon the expression.

Good luck with the internal scan later on today. An internal scan though will not detect all the endometriosis deposits; what this will give is an overview of what the uterine cavity, fallopian tubes and ovaries look like. They should be able to see "chocolate cysts" if they are there.

Danazol and zoladex (it sounds like you've been offered one of those) certainly have thier place but they won't get rid of endo completely and have side effects like those you state. BTW drug treatment will not touch adhesions once they are formed; these have to be cut out.

Be wary as well if a hyst is offered; this does not always relieve endo completely.

You will likely need surgery - I can give you a list of questions to ask post surgery if you want. The more you yourself are informed the better off you are when it comes to making treatment decisions.

Do look at www.endo.org.uk; its the website of Endometriosis UK and its very informative. Would recommend any endo patient to read their web pages.

sugarpear Tue 09-Sep-08 12:39:51

Hi attilla

I had endometriosis cysts removed 7 years ago. But at the time i was told that were fatty tissue! The pain from them went on for 5 years and i was suicidal. I lived in margate then and getting an op was that long a wait.

I know i need surgery the consultant has told me that i just hope its not to long a wait.

Just before this period i didnt have one for 2 months and in those 2 months i has 2 weeks of no pain. It was pure bliss. I could run around with the kids i even excercised i was that excited!!! lol

Im sure i have adhesions as i can feel what feels like a cyst( lump) just under the skin in my scarring where the drain was situated after my last and final c-section 2 years back. I was also sterilised too if that makes a difference?

Well the scan is tonight just after 6. And i see the consultant again on friday so he can tell me whta op i have to have. And hopefully it wont be a long wait.

I would really appreciate the list of questions as my brain is flat! I cant think straight for the pain sometimes.

murphyslaw Tue 09-Sep-08 15:36:02

really sorry you are in so much pain - I am a fellow sufferer and have just discovered the magic of tens!! - picked up a machine 2 weeks ago in Boots (£19.99) and it really helped the pain. Check with your consultant first but its worth ago.

Hope all goes well for you smile - you are not alone.

AttilaTheMeerkat Tue 09-Sep-08 19:16:35

Hi,

Here are some questions to ask post laparoscopy:-

Were the ovaries and fallopian tubes healthy?
Did you have an ovarian endometrioma - if so how big?
Did you have many adhesions?
Was your bowel or bladder involved in the disease?
What stage is the endometriosis?
What are the results of any biopsies?
Were any nerves cut to relieve your pain?
What further treatment is recommended?

sugarpear Tue 09-Sep-08 20:18:00

Hi i am back from my scan. Uncomfortable but not painfull.

There is no collection of endo in my tubes or ovaries. So could be in my scar or it could be adhesions?

But it turns out i have polycystic ovaries!!!

Talk about get one get one free!!!

I have no idea about them so i will go google them before i see my consultant on friday.

Thanks for the question attila. I will keep them handy.

sugarpear Tue 09-Sep-08 20:18:20

Hi i am back from my scan. Uncomfortable but not painfull.

There is no collection of endo in my tubes or ovaries. So could be in my scar or it could be adhesions?

But it turns out i have polycystic ovaries!!!

Talk about get one get one free!!!

I have no idea about them so i will go google them before i see my consultant on friday.

Thanks for the question attila. I will keep them handy.

sugarpear Tue 09-Sep-08 20:18:59

Ooops posted twice!

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