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It's me again, does anyone on here have endometriosis who I can talk to please??

(33 Posts)
singyswife Mon 06-Oct-08 19:04:54

I suspect I have endometriosis and need to speak with someone who has it can anyone help?? Thanks

singyswife Mon 06-Oct-08 19:13:28

Anyone ???????????

singyswife Mon 06-Oct-08 19:18:41


singyswife Mon 06-Oct-08 19:26:25

sorry just keep trying to bumps myself so I get noticed.

singyswife Mon 06-Oct-08 19:39:06

Okay well i will try later.

lovecamping Mon 06-Oct-08 19:42:09

my sister died from endometrioic cysts last year.

i cant say i know that much about it but if you suggest anything, please get it checked out.

lovecamping Mon 06-Oct-08 19:42:41

oops sorry, 'suspect' i mean

shelleylou Mon 06-Oct-08 19:52:01

I was diagnosed with endomoetriosis at 19. Ill help as best i can with any queries you may have.

gigglewitch Mon 06-Oct-08 19:53:50

another one here. had it diagnosed about 14 yrs ago - oh the joys. what do you need help with?

singyswife Mon 06-Oct-08 19:54:00

lovecamping, what happened to your sister?? How did this go unnoticed?? Sorry for your loss.

singyswife Mon 06-Oct-08 19:56:44

Hi thanks for answering. Basically I have been diagnosed with 'suspected'pcos. I am not convinced. I have had trouble with my periods since they started at 11. Irregular, long, painful etc but recently (last year or so) I have been spotting for several weeks between periods and when they do eventually start they are really painful and it is like someone has turned the tap on. TMI I know and Im sorry but I need to be armed with stuff before I go to my gp AGAIN with this. The bleeding between periods is the big thing and if I can get a reason for this then I would be a happy bunny.

luckylady74 Mon 06-Oct-08 19:59:48

I have endometriosis - consultant said it was a severe form called ondometriosis where it gets everywhere not just the womb or something - I can't really remember because after having a cystectomy, 3 dc by ivf and deciding I wasn't putting up with 3 week periods and wearing nappies I had the mirena coil put in and now I don't have any periods at all - bliss!

shelleylou Mon 06-Oct-08 20:01:37

I had the irregular painful periods but didnt have any spotting between periods. Do you have any other symptons?

luckylady74 Mon 06-Oct-08 20:02:56

I had spotting between periods too - do you want to be referred? I don't know how the treatment would differ between the 2 conditions? I have many of the symptoms that my friend with pcos had - hair/weight and so on, but she had bad skin too. Perhaps you need to shout for some pcos sufferers?

lovecamping Mon 06-Oct-08 20:07:00

thanks singyswife

she developed it after the birth of sons and it got really bad very fast. she was in real pain every period. she developed cysts which started in her uterus(?) and then travelled to the her body. there was one deep in her abdorman(?) which burst and she died instantly. she did know she had them but the cyst that killed her was so imbedded, the doctors probably didnt know about it.

there is someone else i know who also has endomoetrioic cysts and she needs surgery every few years to clear them.

i'm so sorry if this all sounds very scary i dont mean for it too.

EllieG Mon 06-Oct-08 20:07:44

My sister has it - will get her to come on and discuss if needed. I know she has just had merina coil fitted and there has been some improvement in horrid painful periods, but they are still heavy and she says the coil makes her feel pg so is bit pissed off

singyswife Mon 06-Oct-08 20:13:40

It was suggested that I get the coil but I am already overweight and I am terrified of putting on anymore however like luckylady said, 3 week periods are not a joy.

Luckylady, how much and for how long did you bleed between periods???

lovecamping, that is terrible about your sister and I am well and truly terrified now. I am sad that something like that can happen to your sister and no one knew about it. How shocking.

I have had numerous scans, blood tests and internals in the last year and no one has ever found anything untoward.

Sorry I know there are too many questions here but I have seen 2 gynie people and several gps and no one for some reason is willing to have a look in there and tell me what the hell is going on and I cant live with it anymore. It is really starting to affect my life.

shelleylou Mon 06-Oct-08 20:14:39

I had months of Zoladex injections after a laparoscopy and quartarisation of the endometiotic cells. Im now on depo provera and have had no trouble with endometriosis since.

shelleylou Mon 06-Oct-08 20:17:52

It cant be diagnosed using scans,internals and blood tests. I had all of those and i was never diagnosed. I going practically weekly to the doctor had constant pains in my abdomen which were worse before my period. I eventually got refered for a laparoscopy after about 2.5 years where they found out what was cuasing my symtons

shelleylou Mon 06-Oct-08 20:18:25

i was going that should be sorry

luckylady74 Mon 06-Oct-08 20:19:43

Basically sometimes it was just one long period of varying levels of bleeding. I can say categorically that the mirena coil made me put no weight on (eating crisps did that) and when I had it after my ds1 was born I was thinner than I've evr been. My consultant who does huge amounts of research into it (I had 3d scans of my womb as part of a research project) said that the endometriosis would make weight gain very hard to shift. The mirena has basically made it(ende) go away just like being pregnant did.

singyswife Mon 06-Oct-08 20:29:32

So have you actually lost weight since being on the coil then??? I was worried that I would put on weight. I have tried...and tried.....and tried.....and tried to lose the weight but it will NOT shift. The gp said it was the pcos (which I dont think I have) but I didnt know that endo had the same effect. I am soooo glad I have found someone who had the same bleeding pattern and pain as me. I threw a tantrum when my mil came in the other day and asked if I was ok and cried all over the place because I just cannot do it any more. I have had enough and I have requested a hystorectomy and they wont even consider it till I am 35. Thank you so much for talking to me.,

FrayedKnot Mon 06-Oct-08 20:40:42

I was diagnosed with endometriosis about 9 years ago but luckily I am mostly asymptomatic atm.

Shellylou is right, it can only be diagnosed via a laparoscopy.

If you have seen two gynaecologists and neither have suggested a laparoscopy then I think you should go back and ask them the question directly.

singyswife Mon 06-Oct-08 20:42:46

This is why I need to be armed with the answers to the thousands of questions I have asked tonight. I soooo need answers now and its just a bloody joke that I am not getting them. It is affecting my life now and I am mighty pissed off. can you tell lol?? I am even considering trying to find money to go private and get it treated.

singyswife Mon 06-Oct-08 20:59:14


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