Feel so lost

[Loulou24]

Has anyone else felt that they had to change their job because of endo? I'm constantly shattered and in pain 24/7. I'm desperately trying to keep it together but I can't stop crying. I'm so low the slightest thing sets me off and it really doesn't help that I feel that I' doing everything wrong. I don't know what to do.

[Mazza1980]

Yes im thinking of changing job as I've been off work for the last month in chronic pain: I also have adhesions from having tube removed. I have a stressful job and it isn't helping but I'm on my own so I need to keep earning. I'm going to see if my bosses will let me work part time for a bit until I get my pain sorted. I'm not sure whether they will or not but it's work that a try. Could you reduced hours or work from home some days ?

[Loulou24 in reply to Mazza1980]

Its nice to know I'm not alone. I think I could ask to reduce my hours but I can't work from home due to the nature of my job. Would be nice if I could though. I hope you are ok. I'm having an MRI soon but waiting to hear when it will be. I've been told my endo has come back a lot quicker than was expected.

[Mazza1980 in reply to Loulou24]

I only had my last op a year ago but I have adhesions sticking things together where my tube was. I think my ovary stuck and something stuck and possible bowel. I didn't see an endo specialist for my last two ops so I don't know if thats why I'm unwell as I saw a general gynechologist. It's an isolating disease I've lost friends over year when I had to cancel things some have been horrible to me. But it's hard to explain pain to people who are ignorant

[Loulou24 in reply to Mazza1980]

I know exactly what you mean. Ive had to cancel at the last minute somethings. I feel so lucky that my partner is so understanding. I hope that your pain is easing x

[JessieP]

Gosh I was thinking these exact things just this last week! I have a very stressful job in Childrens Services & I reached out to my (usually understanding) boss to let him know just how much I was struggling but Im not feeling he heard me at all. Just wants me to make sure all paperwork is done by next week or else really.

I wish I could afford to go p/t or even term time only but I cant, its just my wages for 4 ppl really.

[DebCBaker]

I have times when I feel exactly like this too, and because it's such a 'hidden' pain, I don't think people really understand just how awful you feel when you are suffering.

I have about 5 days a month now where I'm not in pain. I'm so exhausted all the time! I've just started a new job and I'm worried I made the wrong decision as it's more responsibility than my last one.

I'm lucky that I managed to fall pregnant after my first laparoscopy, but we're now trying to conceive again and I'm in more pain than I've ever been, so I can't see that I'll be able to conceive naturally this time around. I had to have a second laparoscopy only 6 months after my baby was born and my endo is already back 6 months later. It seems to be so quick in growing back, makes me worry what the long term implications are.

I ended up crying in my doctors surgery the other day saying I just don't feel there's been any support since my diagnosis, just a referral for an operation each time the pain gets too much to bear.

[Starry]

Big hugs. Maybe you could reach out and seek emotional support from those you trust and consider medical help for possible depression as you seem so very low. That always makes everything so much harder to deal with. X x x x

[Loulou24]

I wish I could see my Dr. I rang yesterday for an appointment and the earliest I could get was next Friday. I just wish that this pain could be taken away from all of us ladies.

[Scooteeder]

Hi,

I'm sorry to hear that you are having a hard time with Endo. I do know where you are coming from, and can only say that there is a huge amount of empathy here.

I have Endo, and the experience has NOT been pleasant. I have found that some people (though not all) can be extraordinarily ignorant and insensitive. Sadly, ignorance and insensitivity can affect anyone, so even friends and family can be included. This does make Endo feel like a very isolating disease, because some people just do not seem to get where you are coming from. Added to that, people can't SEE your Endo, so some just treat you like you are making it all up and fussing about nothing.

Endo is a frustrating illness, in that it can cause no symptoms whatsoever, right up to totally horrendous symptoms. Annoyingly, the amount of Endo a woman has may have nothing to do with the amount of pain she experiences - which is perhaps another thing that causes some people to treat women with Endo as "fusspots" or "complainers". The truth is, we are NOT. Our symptoms and experience of pain is both very REAL, and sometimes very SEVERE. Whilst a few women are lucky enough to have no symptoms even though they have Endo, this is NOT the case for many.

Women who DO have symptoms can experience a wide variety of problems, all of which can be debilitating and unpleasant to live with. Symptoms can definitely impact upon your life, making things like work and social life complicated. Women with Endo commonly experience symptoms of pain and fatigue - these seem to be near-universal. Other symptoms may depend upon where the Endo is growing in the body, but women can suffer all manner of problems - from low back pain, to pelvic pain, bloating, cramping, bowel problems and upset stomach, bladder and urinary problems, nausea, heavy and painful periods, irregular periods... Sometimes Endo leads to adhesions, which are sticky fibrous bands of scar tissue that grow and can stick organs of the body together (sometimes so severely that it damages the function of those organs). Adhesions may lead to severe pain, because movement of our bodies causes them to twist and pull. Sadly, worst case scenario is that Endo leads to infertility - which some women find devastating.

When you stop to consider the above, it is little wonder that women with Endo may struggle, and may find the illness deeply unpleasant. They are NOT fussing about nothing. They are having to live with a really debilitating illness, and if anyone else had such symptoms, it is pretty clear that they would probably not be happy. The fact that Endo cannot be seen is a huge problem. People only seem to understand things that are obvious to them, so the fact that a woman can have Endo and be really ill, but looks healthy on the surface can be really hard for some people to comprehend. Instead, it seems that it may be easier for them not to believe what women with Endo say about their pain and symptoms. What I guess we ALL need to remember is that we DO have Endo, so we are being TRUTHFUL. If somebody else does not believe us, or cannot understand us, and will not support us IT IS THEIR PROBLEM AND NOT OUR'S. People who do NOT get what we are experiencing - people who are insensitive and uncaring - are people who COMPLETELY LACK EMPATHY. We should both pity and avoid them! Lack of empathy is a BIGGER problem than Endo! Endo is treatable - lack of empathy is NOT! We should surround ourselves with people who are supportive, kind, understanding and caring - THEY are the people we need in our lives. People who accuse us of fussing, lying, malingering, hypochondria or making things up are TOXIC people we DO NOT NEED. A TRUE friend - somebody who TRULY cares about us - would NOT disbelieve what we say about our Endo. They would try to understand.

Employers who are unsupportive can be a BIG problem (I know from personal experience). It is important that we make ourselves aware of our rights at work. For a start, employers have a DUTY OF CARE, and this includes taking all reasonable steps to promote and protect the health, safety and wellbeing of their employees (both physical and mental health). Furthermore, legislation including the Equality Act is there to provide employees with protection at work - including protection against discrimination that may be caused by disability. In some cases - if symptoms warrant it - Endo may be classed as a disability at work or in education. If you are having problems at work, school, college or University it may be a good idea to meet with your employer, teacher or tutor to discuss your symptoms and to ask about any help that may be available. Some employers also use Occupational Health - which can be a big assistance to employees. Occupational Health can do assessments that look at your symptoms and their effect at work. They can write reports that make recommendations to your employer suggesting ways that your employer can help you to cope better at work. Indeed, if your Endo classes as a disability, your employer can be expected to make REASONABLE ADJUSTMENTS to help you stay at work, and to assist you to manage your symptoms. Such adjustments can include things you request, or things recommended by Occupational Health. Colleges and Universities often have student support departments, and again, these can be very useful in providing advice and assistance to disabled students, ad students with long term health problems.

For advice about rights at work, anti-discrimination legislation, reasonable adjustments, Occupational Health, or support for disabled or chronically-ill students, see the following websites:

ACAS - information about working rights, coping with illness and disability at work, and making complaints about unsupportive employers (acas.org.uk) helpline = 08456 474747 (Mon - Fri 8am -8pm, Sat 9am -1pm).

Disability Rights Alliance - information for disabled students and students with long term health problems (disabilityrightsuk.org) helpline = 0800 328 5050 (11am - 1pm Tuesday and Thursday).

Equality Advisory Support Service - advice on disability discrimination and disability legislation (equalityadvisoryservice.com) helpline = 0808 800 0082 (weekdays 9am - 8pm, Sat 10am - 2pm).

I'm sorry if this is a long reply, but I hope that it ma contain some useful information that helps you, or other people experiencing similar problems. Don't give up or be disheartened! Instead, tell yourself that YOU are living every day with Endo, and that you are still trying to get on with your life in spite of this. Remind yourself that this shows you have a LOT of strength and ability. Remember that there are lots of people out there who DO NOT have Endo, but whose lives are not as successful as yours. When you have a disease like Endo, going to school/college/University and getting good qualifications is a massive achievement. Holding down a job is a massive achievement. So - if somebody like your employer is less than supportive, remember this. Also, Endo UK has a downloadable booklet of advice for employers that women with Endo can give to their employers to help explain the issue. It can be found at...

endometriosis-uk.org/public... (it's the "Endometriosis In The Workplace" leaflet).

Hoping that some of this helps - you, or anyone else reading it. To all you ladies out there with Endo - keep your heads held high and remember that Endo is not beating you. You still have lives despite Endo, and that alone is a sign of your strength. Women with Endo are NOT quitters!

Best wishes, E. x

[Loulou24]

Thank you x