Newbie

[Disneygirl]

I found this forum while researching endo online. I was diagnosed 2 years ago, had a lap 18 months ago which removed a substantial amount of endo and then a mirena coil fitted after to stem the bleeding. I've been trying to give the coil a chance but, while the bleeding has stopped, the pain is worse every month. The deep ache I live with every day is accompanied by a sharp stabbing in my abdomen and back and I get so tired I could cry. I feel so happy to have found somewhere where I can honestly say, for the first time in 12 years (I am 26) that this is too much for me, I can't cope with the pain anymore and I don't know what to do. I am so tired of putting on a brave face and trying to pretend I'm not struggling. It makes me feel like I'm not normal. I caved in last night and went to A&E only to be made to feel like a waste of time and told there's nothing wrong with me. I started counselling last week and it's been really helpful but what I would love is to see other people's stories and to know I am not alone because sometimes it really feels that way. I would be grateful for any replies ♡ Xxx

[tmc182]

Just wanted to say sorry you're feeling like that. I am in the same position as you, just had my 3rd Lap, trying the mirena coil for a 2nd time after a horrendous 11 months with it in 2011, but felt I had to try what the consultant was asking me or I'd get no where. I can't be much help to you, but I suggest persevering, trying different GP's and asking keeping a log of your symptoms and hopefully you will come across a helpful doctor soon.

[Disneygirl in reply to tmc182]

Thank you so much for your reply, even though it's awful that anyone else suffers with this it's reassuring to know you're not alone x

[stephani]

get the coil out!!! try something else! go and see a different doctor, I usually go to the GUM clinic at my local hospital.. some of the doctors are fantastic..

don't take one opinion only..

Have you tried the combined pill? Loestrin was working well for me.

You might need another scan, pain is not natural, it is a symptom. YA&E are good for dealing with life threatening issues but this no.. you will need more ultrasounds/MRI etc..

the pain for me started at 40, with puffy face symdrom, I basically look tired 24/7.. no social life anymore! the pain is moderate but daily, though had a massive crisis last month, they found a cyst..

I am on Micronor but it is not working anymore.. thinking of having the laparoscopy too..

weird as the specialist basically left it to me to decide.. I feel lonely too..

[Disneygirl in reply to stephani]

Thank you so much for this x it's helped me loads. im sorry to hear you suffer daily too

[Disneygirl in reply to stephani]

And you're not alone, none of us are. but doesn't it feel that way sometimes... feel free to vent or tell me about it, I've been as low as you can go and I know how it all feels x

[happyseal]

Hello Disney Girl..have to say that is a happy name haha.

Welcome to the forum. It is a great place to share and to get to know more of how each lady here cope with the pain. If I may ask, besides the coil and lap, what do you do to cope with the pain?

[Disneygirl in reply to happyseal]

Thank you =) I am a huge disney fan! I do yoga twice a week, exercise regularly, use heat pads/hot water bottles for pain during work the the rest of the time I relax and lie quietly until the pain subsides. I take mefanemic acid as and when I need it too but recently the pain haso really upped and none of these things are working like they used to. what do you use? x

[KimJL]

+@Disenygirl

Hi, I have been diagnosed with Adenomyosis since 2005 at age 28. I am currently 39 & planning to have an open sub-total hysterectomy next month. The sharp stabbing pains all over the pelvis, hips, buttocks & the deep ache in your belly are very familiar to me. I have never tried Mirena, but I have a relative who also has Adenomyosis & she loved it. I guess it is different for everyone.

I started menstruating at age 10 & it was always painful. I have been to several doctors, even Gynaecologists over the decades that have told me, 'oh you are just one of the unlucky one', 'you have to find a way to cope', 'you cannot use your period to as an excuse to miss school or work', 'the doctor's job is more stressful than your job', 'why are you stressing yourself? 'you are making yourself sick!' Yes, I know the horrible things that so-called health professionals tell you. Ohhhh.... and when you show up for pain relief & the nurses look at you like a junkie. The 'oh she cannot handle pain' comments, or the 'just get pregnant, that will help', or 'you need a husband!'. Yup!

But we all know that the symptoms and pain are real & you are not imagining things. No we are not normal, we are Superheroes!!! The people that don't understand us or criticise us cannot spend one hour in the pain that we have, they'd probably wither away!!

Pain Relief- I have used Traditional Chinese Medicine (acupuncture, cupping, herbal treatments & heat therapy) for pain management for about 5 years & it has helped to regularise my cycle without hormones which was important as I had severe chronic migraines & hormone meds made them worse. I also weaned off the migraine meds that made me like a zombie. The treatment reduced the migraines episodes & their severity, reduced bleeding- although it is still heavy compared to someone without Adeno, reduced clots, helped with the stabbing pains, and reduced the PMS symptoms, less mood swings, reduced the low-grade fever I would get with migraines & period. Other than that I use Olfen & Buscopan Plus during period time, if things get to painful then I get a shot of Olfen 75 mg & Buscopan Plus 25 mg. I hope that you get some pain relief and remember you are awesome!!!

[Disneygirl in reply to KimJL]

Thank you so much for sharing and for your support. you are so right in everything you say, thank God we have each other eh girlies! xxx