Wish I'd found you long ago...: Hi Girls... - Endometriosis UK

Endometriosis UK

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Wish I'd found you long ago...

Suzie69 profile image
9 Replies

Hi Girls, hope you're all well ( as well as you can be with this).. I've had E since I started my periods at 16 and I'm now 47... because I am older and smoke, I've been told the only thing they can do for me is anti- inflammatory painkillers or  have a hysterectomy... have any of you been told the same?

I cannot wait for the menopause just to get rid of the agony every 3 weeks ( sometimes more often) and I'm actually finding myself  jealous when I hear other girls saying they're having "hot flushes"  etc.... 

Sick of wearing a blooming nappy too! Sorry for the rant/moan/vent- but right now I'm in complete agony.

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Suzie69 profile image
Suzie69
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9 Replies
Tboag profile image
Tboag

Hi, ifs a long journey, can I ask are you under a bsge centre?? Or general gyne?? 

A hysterectomy isn't a cure for endometriosis, the body still produces estrogen which can still feed the endo and it's also self feeding, so unless you have a thorough excision of all endo you could like me still have Endo symptoms and pain, 

Obviously a hysterectomy will stop periods, which is great if that's your main problem. I had Adenomyosis, hence the hysterectomy,

Good luck, and make sure your in the right hands, xx

Suzie69 profile image
Suzie69 in reply toTboag

Hiya,

Thanks so much for replying :-) 

I'm just under my doctor . We've tried all the mini pills, minerva or whatever it's called coil, but I bled 24/7 with them all, so I kinda feel I've to sit it out. I think I'll go back to doc and ask to be referred to Gyno for once and for all.

Have a lovely day xx 

sarahgregory profile image
sarahgregory in reply toSuzie69

As others will probably say, get a referral to a bsge centre not a general gyny as the bsge specialist can deal with any endo better. See posts by a lady on here called Lindle she is very informative. All these best x

Suzie69 profile image
Suzie69 in reply tosarahgregory

Hiya, thanks so much for replying. I'd to google what bsge was... yip- really clued up ;-) I'm just finished work, but I'm going to read about it all and also try and look at that ladies posts too. I can't thank you enough. Have a lovely night xx

sarahgregory profile image
sarahgregory in reply toSuzie69

No problem, and thanks. I'll was seeing a general gyny and then after reading on here and some answers too my posts i  have got my gyny to refer me to a bsge centre and am now waiting for an appointment. A gp can also make the referral. All these best x

Suzie69 profile image
Suzie69 in reply tosarahgregory

Thanks so much for information Sarah, I really appreciate it. You just sometimes feel as if your banging your head off a brick wall.

Suzie x

mihaelad profile image
mihaelad in reply toTboag

Hello Tboag,

I didn't find to many ladies here with Adenomyosis and just have a couple of questions for you if you can.. I have adeno, diagnosed 5 years ago and I really can't take it anymore. I dont have children and I keep on trying unsuccessfully.. do you have kids? if yes, was the pregnancy okay? 

and second question, did you have very severe low pelvic pain right after period? I have horrible pain after my period for about 4 to 6 days until ovulation.. just seems a very strange symptom to me that is not comon.

Thank you.

Tboag profile image
Tboag in reply tomihaelad

Hi darling I'm 40 and yes I have 3 sons, all pregnancies were fine and births, but I was only diagnosed last march, feels like a life time, but I have Endo too, do you?? My main probs were pain in back and pelvic area, and periods on my main day I literally felt like I was giving birth every 3 weeks, I'm still struggling with endo, and still have pain most days, so it's very hard for me to differentiate between the 2, I had a hysterectomy in July and since that, it's only really my period time that's benifited, but that's due to endo, 

Have you tried ivf or a fertility clinic?? 

Good luck and I answer any questions if I can xx

mihaelad profile image
mihaelad

Thank you for taking the time to replay and I am sorry to hear you still have pain after hysterectomy, that's awful... 

I had three pregnancies but I wasn't able to keep anyone longer than 21 weeks, unfortunately. I consulted fertility and IVF but they gave me very low chances to carry a healthy pregnancy due to advanced adenomyosis. Last time I had a laparoscopy (two years ago) they did not find any endo but since then my symptoms and pain got worse and it's possible I developed endo too, just not diagnosed yet. 

I am 40 now and I decided I 'll have a hysterectomy next year if I am not going to be able to have a child until then.

Thanks again for sharing and I hope you'll feel better.

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