To ask for endometriosis non-events?

[crabbyabby]

Likely diagnosis of endo, it's a lonely process reading up on it all. Support pages on fb etc are choc full of awful cases, I know the people frequenting these pages are likely either new to it (like me) or have suffered continually.

AIBU in asking if there's anyone who was diagnosed then nothing much happened? Easy ride with it?

There must be people that get diagnosed, start treating it and it's all fine, never think much about it again and therefore aren't online on support forums.

Please identify yourselves if you exist! I need hope!

Me! About 7/8 years ago I had a laparoscopy and was diagnosed with endo. I had the scar tissue lasered and an iud placed. Recovery was easy, and the coil was fine for around 18months then it fell out (not painful).
It’s only been in this last year that I’ve had heavy and painful periods again, so I managed 6/7 years with normal ish periods, which were not nearly as bad as before. I’ve got another gynae appointment coming up and will discuss what to do next.

How are you feeling? Getting a new diagnosis can be scary, and horror story’s online don’t help. I’ve met many women with endo who are managing well after treatment and have gone on to have lots of children.

Gosh so many people! Research thinks 10% of women have it - so most women are going about their lives not even knowing or not even being terribly affected by it.

You’re absolutely right in saying you’re only reading about the bad cases because the ‘good’ or non cases don’t talk about it.

If you do want to talk about it then there are lots of support options available. Endometriosis UK, for example, run support groups across the country. www.endometriosis-uk.org/find-a-support-group

Me! I have painful periods and ocassionaly bad lower back pain but apart from that it’s manageable. I adjusted my diet, cut down on sugar and carbs and upped my exercise. I take magnesium and Vitamin D3 supplements. I go for massages when my lower back pain gets bad and that’s it.

Thanks thanks and more thanks for posting, all of you! I needed some bloody encouragement.

I'd be lying if I didn't say I'm scared, reading up on it all had me off down the I'll be in pain forever and never get pregnant rabbit hole. I've been fobbed off a bit so I'm going to push to have it looked at propely and get a plan in place.

So the coil helped with your symptoms a lot?

violetgrey Did you try hormonal contraception or anything like that?

Thankyou for the links, I've had a look on the site I was wary of support groups for hearing more terrible outcomes as its imagine the same as online groups applies there too

I didn’t try hormonal contraception to manage it. It didn’t agree with me in the past, pre-diagnosis so I didn’t try again.

Struggled for years, had mirena coil put in. First week could literally feel pain dialling down. Note I forget that I have endometriosis.

Was diagnosed during fertility treatment and had a laparoscopy for the tissue. Conceived on the next cycle, the pain stopped and has not returned in 10 years, plus I’ve gone on to have two more children naturally.

I had two laparoscopies to diagnose and treat endo, and have had Mirena coils since the second and no further problems. Had the coil removed to TTC, and conceived first month of trying. Had coil back 6 weeks PPT and now as per previous poster I don't think about it at all.

I've suffered with painful, heavy periods since I was 15. For 15 years I was fobbed off and told to get on with it by GPs. The pain made me incapacitated and I often vomited; I was told this was normal. The blood loss made me anemic.

After TTC for 3 years, I was finally diagnosed with endometriosis. The endo has sadly done so, so much damage over the past years I am now infertile.

I've just had a laporoscopy to remove the endo and cysts, so hopefully I'll be out of pain at least - but I'm having counselling to come to terms with my infertility. My specialist said there's every chance I would have conceived if my endo was treated sooner, not sure how to come to terms with that.

I wish I had a better story to share!

i had it and had a mirena coil inserted and barely feel anything any more! (And no more periods!!) yippee!

I don’t have much pain. I just aware of it but not in pain.

However I am struggling to get pregnant.

At least you now know is how I look at it. Knowledge is power.

Since my diagnosis (which took 9 years) I have had two surgeries and the induced menopause treatment (GN something?). I have also had two kids. I'm now on the mini pill and I have a mirena. I have no periods at all. It's brilliant.

I have endometriosis and I remember exactly how it felt emotions wise when we got close to a confirmed diagnosis.

I had laser treatment and because of how long it took to diagnose I did have to have my right Fallopian tube/ovary removed due to the damage the scar tissue had caused. Was told at that point I’d likely never have children ‘naturally’ (word they used) and it would likely be difficult even with medical intervention.

I think my remaining ovary heard them because a few months post surgery I fell pregnant with my twins! Since the pregnancy my periods have become far more manageable too, far less pain (still a fair amount mainly around the lower back but only for a day or two now, used to be chronic pain from beginning to end of each menstrual cycle). Coming off contraception helped me also (it might not in your case each is different) as there is a history in my family of blood clotting issues and my very good physician hypothesised that the hormones in the contraception added to my symptoms.

It varies, I’ve known many women who have come through diagnosis and after the appropriate treatment have been absolutely fine, still some increased pain here and there but far improved on pre-diagnosis/treatment.

It’s not easy OP and I send you virtual hugs and

It's really so helpful to read all these, so thankyou again everyone.

FactorFifty I'm sorry, that's rubbish - I've heard lots of women say they haven't been taken seriously. Myself included I suppose, likely diagnosis and I've been told to get back on the pill see how I go but to TTC sooner rather than later, very encouraging (not). I have a small cyst so not a great plan to "hope for the best". I hope you're doing okay and I'm so sorry you've been so let down.

I'm glad I posted this thread and I'm glad so many of you have pretty normal lives post diagnosis, and success with pregnancy!