Is there any financial help available to endo and adenomyosis sufferers? I'm really struggling to work and am becoming depressed

I am in constant pain and every month is worse than the last. I'm trying for a baby and am gutted when my period comes. I feel so alone and really cant cope with the extra stress of taking time off every month. Please help x

[hayz]

I cant answer your question but just wanted to say I know how you feel, I'm in exactly the same boat with both conditions. Just before Christmas however I had my endo removed including appendix as it was on it as well and had the nerves from my womb cut to help (hopefully) with the adenomyosis. My surgeon told me not waste anytime now. I've had 1 period which was quite bad (took tramadol) but lots of sufferers say this is normal after an op. go to ur GP, get referred to a gynaecologist, see what they can do. It did mean putting trying on hold for a few months but hopefully it will help now. Good luck.

[Hidden in reply to hayz]

Thank you. I just feel so lost at the minute. I will go back to my gp. I hope you don't have any more bad periods x

[michy1880]

omg... was reading and thought this was exactly what was happening to me. I had the same issues including a cyst on my left ovaries. I had a laparoscopy/ hysterscopy in November to remove the cyst, treat the endo/ adenomysis and remove polyps. I have since had two periods, the first was pain free but the second was awful... lots of pain although it has helped the adenomyosis for sure [my menstruation is not as heavy as before]. I have only found out about having all these issues since trying for a baby. I have been trying for a while now and i do get frustrated when each month my cycle returns. I won't give up though but its disheartening. I think you should approach your doctor and ask to be referred to a gynea. Be persistent with what you feel and know about your body because i encountered a lot of confusion with different gyneas saying different things. I can relate to the loneliness and everything. You are not alone.

[Hidden in reply to michy1880]

Thank you for sharing what you're going through. I'm usually so positive, but I've had Endo since I was 11 (I'm now 27) and I've only been diagnosed with adenomyosis in Sept 2013. Having my coil removed has set the pain back to the maximum again and i keep telling myself it'll all be worth it when I hold my baby but that just seems so far away right now and all I'm left with is horrendous pain and people who don't understand whats happening to me. I've had 2 laparoscopys and a colposcopy and every time I take longer to recover. It just feels like we've got the short straws and other people can just breeze through life

It's so good to know I'm not alone, but so horrible to think that others are suffering the way I do.

This disease is absolutely horrible

[michy1880 in reply to Hidden]

I read with tears in my eyes but the joy comes when as you say, 'hold my baby'. I have heard of people conceiving so we mustn't give up hope. I feel so hurt when i see people falling pregnant. I tried the coil before but I was constantly spotting so i had it removed. I used to be on the pills when i was 16. I am now 33. I have tried different contraceptives on and off but nothing consistent. I was told that using contraception helps the pain caused from endo but once you're off the pain comes back.I am glad for this site because i feel less alone and more in control. I have made some changes to my diet and i hope this helps in the future.

[Tinkerbell89]

I'm not sure about the help financially as I am in the same boat as yourself.It will depend on your circumstances. I was told just today as I am married I need to live off my husbands wage. I have been off work since Oct 2013 with severe pain and my employer being so annoyed and not understanding how bad things can be. I am waiting for lap at the moment. Are you taking Folic Acid 400mg daily? My GP advised me to start taking that as I am trying to conceive. Hope things work out for you. Always remember you are not on your own x

[Hidden in reply to Tinkerbell89]

Sorry to hear that your boss isn't very understanding and that you have to live off your husband's wage. It's so unfair isn't it?

Yeah I take folic acid everyday and just hope and pray

I hope everything works out well for you too

Its really good to know there's lots of support out there.

Thank you x

[Tinkerbell89 in reply to Hidden]

Have you seen anyone at Infertility clinic to see if there is anything they can do to help you conceive? x

[Hidden in reply to Tinkerbell89]

No but I will definitely look into that. Thanks x

[Tinkerbell89 in reply to Hidden]

My GP has referred me and i got an appointment quite quick and have clinic at the end of this month. Everything is worth a shot.Just seems everywhere you go is a baby or pregnant woman and I don't know about you but I always get jealous and wish it was me. x

[michy1880 in reply to Tinkerbell89]

Some people just lack empathy and that can be frustrating but focus on what you want. Someone told me about the pregnecare for him and her.

[Hidden in reply to michy1880]

Thank you xx

[daffodil]

Endo and adenomyosis are classed as disabilities/chronic illness.You should be able to get statutory sick pay from your employer and then when that runs out you can apply for Employment and Support Allowance.Citizens advice Bureaus can help you fill in the form and Endometriosis Uk did used to have a greatset of leaflets on claiming benefits.There is also an excellent website -turn2us( think that is right?) where you can get a full list of all benefits available for different circumstances and you can do a benefit check.Also moneysaving expert.co.uk is a fabulous source of info.Best ever and well worth the joining fee,is benefitsandwork website which takes you step by step through the ESA AND PIP forms and gives yoi wording suggestions.

I have had a lot of experience with benefits as have been longterm ill with endo,adenomyosis,Me and Meningitis,so am very happy to help out if I can.Just PM me as don't want to discuss such info on public forum.

[Tinkerbell89 in reply to daffodil]

Daffodil Thanks for your info about this. really helpful to me as today my employer has told me they are not accepting my sick line with no reason whatsoever. I just feel when you try deal with benefit people it always seems to be a nightmare and you get nowhere unless you know how to work the system x

[Hidden in reply to daffodil]

Daffodil, Thank you so much for all of that information. I wasn't sure if they were classed as disabilities or not. I went to CAB today and she said to stay in employment for as long as I can but to be honest, I can't stick it anymore as I work in a nursery. Not only is it physically demanding, but it's a constant reminder of babies and children so I'm becoming quite depressed too.

Thank you, this is all so helpful x

[daffodil in reply to Hidden]

Oh - unbearable to work in a nursery with endo and as you say extremely physically demanding.At least when I taught primary I could occasionaly sit down.You should also mention depression as this will add to claim.tTry to get Gp to back you up or treat you for depression as they like to see medical reports and prescription list lol-think it proves we are actually telling truth!You have to think of your long term health -if you are in agony,run down and struggling through the days,you are not going to fall pregnant,even if it is still possible.Look after you first -do you have a partner to support you?Also are yoi being seen by a gynae?Perhaps you could get more effective treatment-there are lots of hormonal/ant hormone ones,all with side effects but many,get at least tempoprary pain relief.Endo and periods don't go together,so aim should be to have as few as possible .I managed for 17yrs tricycling various contraceptive pills,but they stopped working after 1st child but also I think preserved my fertility?Maybe stronger pain relief?I would def gp to your Gp and explain just how badly your periods are affecting you and see what he/she can do to help.Feel free to chat anytime.

[GeorginaG in reply to Hidden]

I had to leave my setting for the same reasons xx

[jay42]

Hi, I really do feel for you. I am currently suffering with endometrium cysts on one of my ovaries and even though I have changed pain relief to something stronger this doesn't entirely stop the pain altogether. Pain relief also leaves me feeling groggy the next day! I started a new job in a school in early September last year and since the beginning of November have either had to take time out because of pain or go to work on a phase return (working afternoons only- I usually work full time) whereby my employer agrees (in line with the Occupational Therapist) for me to work less hours. I was told by my Gynae Specialist last week that I would have to wait another 3 months before they can operate. The emotional distress, along with the pain has become too much and the doctor has signed me off again for another week. I also find myself stressed out about work as I emailed them last week to advise of my condition and length of time to now need to wait for the op on seeing the Gynae Specialist and they haven't responded at all. Stress only makes the condition worse. I really do hope that you find a resollution yourself and remember, as my husband and friends keep telling me, no-one will look after you but yourself. Try to keep calm and rest plenty if you are able. X

[Hidden in reply to jay42]

Hi jay42,

I'm sorry your work aren't very supportive, it makes it all 10 times worse. It's good to know I'm not going through this alone and that others have similar problems. It's just so unfair that we all have to deal with this horrendous disease and that it's really not taken that seriously at all.

Thank you for the support and I hope everything works out for you and that work start being a bit more supportive. X

[jay42 in reply to Hidden]

Hi Fay_b,

Thank you so much for your response. It's great to know that we can all seek advice and get wonderful support from each other on this site!! You take care of yourself and I wish you well for the future x

[Hidden in reply to jay42]

good luck with it all xxxx

[omnia]

Hi,

Apply for Disability Living Allowance- get someone good with forms to help you. Endo is one of the most dibilitating disease's that anyone has to live with-including me....I get angry when I know people who are claiming dla for a lot lot less....Go for it & dont give up.

[Hidden in reply to omnia]

Thank you omnia x