Im so fed up...

[Painintheabdomen]

Hi,

Newbie here- diagnosed with endometriosis 10 years ago- I have had every single Combined contraceptive pill going and they usually offer me 6-12 months relief before they seem to stop. I've tried the coil and ended up in hospital with a severe alergic reaction (imagine will smith int he film Hitch!), tried the implant and progesterone only pill which turned me into an absolute evil person and I thought I was having a nervous breakdown (stopped POP last week for this reason!)

I don't know what else I can do but i'm currently losing 200-300ml blood per period and the pain is enough to bring me to tears and sometimes to collapse to the floor.

Im iron deficient anaemic and on iron tablets, and tranexamic acid for the bleeding but little works and I am getting to the end of my tether.

I haven't had children yet (i'm 35) and am unsure if I want them, but can't right now due to studies and finances even if I did.

I dont know where I go from here- I have a GP appt next week but feel so very low and alone. Plus my period has just started early as I stopped my pill and now I feel like crying.

Guess just wanted to know I am not alone

J x

[Gertiee]

So sorry to hear about all this. You don't deserve this! Endo can be really tough to manage. You deserve better, honey. I hope things ease up a bit! You can get through it. Lots of love and support for you. x

[Hidden]

Have you seen a gynae yet? Sounds like you've tried lots of different options, but would you consider surgical treatment if it was offered? Might be time to ask your GP for a referral if you haven't already.

Sending hugs.

[Painintheabdomen in reply to Hidden]

Sorry yes meant to say I've had 2 x laparoscopy which showed minimal endometriosis (doesnt feel like it!) which was removed. It always gets better for a while but this time just 4 months relief. I don't really want to keep having surgery but cannot live like this x

[RothShep in reply to Painintheabdomen]

Sorry to hear you're having a bad one. I think I recently read that the amount you have doesn't necessarily reflect how much you suffer so I wouldn't worry about that. You're definitely not alone here and I hope things get better for you.

I'm due my first lap soon and I've started to look into diet and supplements as lots of people seem to say it does. People seem to have different triggers so what works might not what for someone else- I've noticed that bread seems to make me feel a little bleurgh . Might be worth looking into for you too. Sorry I can't offer much else.

[R1130]

Your not alone 😁

[RicEndoUK]

Hi Painintheabdomen,

Welcome to the forum!

I'm sorry to hear you are having such a tough time. Please don't feel like you are alone - you are definitely here amongst people who all understand what you are going through.

If you feel like you need someone to talk to, Endometriosis UK do have a free confidential helpline staffed by volunteers who have experience in the condition. You can find the opening hours here:

endometriosis-uk.org/helpline

They also run support groups where you can meet like-minded people. You can see if there is one near you here:

endometriosis-uk.org/find-a...

Please take care and we are all here for you.

RicEndoUK

Volunteer Moderator

[Maisy2006]

Bless you. Just to let you know that I am in exactly the same boat. My consultant has basically told me that I need to make a choice of trying for a family or consider an operation that will likely mean I never will be able to have children naturally. They never were on my list of priorities but equally having to make this choice has rocked my world. I have to do something though as I can't face being so ill every month and then spending the rest of the month drained of all energy and drive. I hate being female!!

[Painintheabdomen in reply to Maisy2006]

What a choice to have to make. I always thought I wanted children but with my husband being much older than me and the fact I'm in the middle of studying, let alone not being financially stable, it just doesn't seem to be what my life holds. But like you say, being forced to make that choice its so painful. I really feel for you. Thank you for your reply. If you ever need to talk don't hesitate.

[sickofthepain]

hi have you tried the injection. I have it and it's stopped my periods been on it for about 7 year and only had a few random bleeds.

[Painintheabdomen in reply to sickofthepain]

I've avoided it brcause I reacted so badly to the progesterone only pill and I don't seem to do well without oestrogen, it scares me that I may turn into a crazy monster again 😂 and once it's in there is no taking it out or stopping it for 12 weeks. thank you for taking the time to reply...in bed right now feeling sorry for myself

[Cartoonfun]

The zoladex injection is good xx

[Cartoonfun]

Week before wears off I'm in agony but worth it I've had it a month so still getting used to it its a slow release drug that helps pain and shrinks it

[Painintheabdomen in reply to Cartoonfun]

That is one of my options but because I reacted so badly to the progesterone only pill and I don't seem to do well without oestrogen, it scares me that I may turn into a crazy monster again 😂 I genuinely felt like I was having a nervous breakdown on the POP. Will look I to the zoladex more though, tha k you for taking the time to reply.

[Hidden]

Unsure if i am allowed to do this, sad if not as this is for helping everyone in all approaches this illness. I would highly recommend turning away from medical model viewpoint and approach it from a different angle. When I turned to the functional medicine approach my life transformed, when i turned to the medical approach i ended up a bigger mes with more problems and feeling so alone and frightened. They dont have a clue what they are doing to be honest in my opinion, and have a first class degree in human biology so I do my research and their approach is so you dont feel the problem. Other approaches focus on the root so you dont get the symptoms. We are the medical system's guinea pigs. I use Heal Endometriosis Naturally by Wendy K LAidlaw and people like Henrietta Norton and acupuncture. You dont have anything to loose, and only everything to gain by trying it.

[Peebles2sarah]

Lupron has been helping me so far with aygestin add-back therapy! A few hot flashes here and there but no periods!!!

[Love_koffy]

Have u had surgery to remove endo yet? Push for that.. Iv been in pain since i was 13, am now 27 and was only diagnosed with endo December 2018. Am waiting on surgery, as iv tried everything possible and currently am under the menopause injection which has seemed to improve my symptoms a little. Have you tried the injection?

[Painintheabdomen in reply to Love_koffy]

Yes 2 lots of surgery now. They helped for a little while but only 5 months this time and now symptoms back worse than ever. It really sucks. I will look InTo the injection more, thank you.

[Cartoonfun in reply to Painintheabdomen]

I was advised at endo clinic

[Jeanchristine in reply to Love_koffy]

Do u mind me asking what injection u got. Iv 2 start the decapeptyl on monday and im very anxious about it as i dont know anybody that has been through it. Or what to expect.

Thanks

[Mash11]

Oh no that’s so sad to hear 😢 have you tried changing your diet at all. Endo is closely related to inflammatory foods. Dairy, red meat, sugars, caffeine and white foods - basically all the lovely things are lethal to endo especially if they make up the majority of your diet. Endo feeds of these foods so eliminating them or the first step, cutting them down should help enormously. White foods covers bread, white rice, white pasta so you need to change to wholemeal. You could try it and see how you go. Xx

[Painintheabdomen in reply to Mash11]

I lost 3.5stone over the last year and cut out lots of my favourite things haha. It's not really helped me in the way I hoped but do enjoy being slimmer! I may revisit my diet though as I'm sure it's not as good as it could be. Shame all I fancy right now is chocolate 😂

[Cartoonfun in reply to Painintheabdomen]

I was same as u cutting down on diet and nothing else helped but this injection ....shrinks the endo and helps pain I got to have five more every 28daysthen follow up at endo clinic

[Mash11]

That’s always the way! If you were told to eat loads of chocolate you wouldn’t want it! Also have you tried castor oil massaged into your abdomen then put a hot flannel over it for about half an hour? The castor oil gets absorbed and it can break down the endo tissue - but not recommend to use during or just before period as it can make you bleed heavier.

[Painintheabdomen in reply to Mash11]

Ooh not tried that. Will do once this period finishes in about a week 😭😭

[Jeanchristine]

Hi dont know if this helps but i bled from december up until the end of february non stop i was literally on d floor ended up in a&e. Was prescribed cyklokapron and mefenamic acid 4 times nothing worked. Eventually went private and was prescribed primolut and it stopped in 2 days. Have endametriosis and hav had tube removed since. Now starting decapeptyl 2 bring on menapause.

Good luck