Have you ever experienced feelings of lon... - Endometriosis UK

Endometriosis UK

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Have you ever experienced feelings of loneliness or isolation due to your endometriosis?

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At work and with family

Mine has been with work too unfortunately & with female managers, shame on them.

No one believes that I have pain, even doctors. My doctors told my husband « take her shopping, then she will not complain from pain’ :(

Bambaloo
Bambaloo in reply to Sarasam

Incredible... I’m so sorry... how unprofessional and ridiculously sexist....

dogdaft
dogdaft in reply to Sarasam

This is awful. I work in the motor trade with mainly men, and not one of them believe that I am in genuine chronic pain every day. I’m discriminated against and treated like dirt because of it.

HannahElsie
HannahElsie in reply to Sarasam

Jeez, that’s shocking. I’ve had some rude comments from doctors in the past but that’s terrible. What an arsehole!

Salvia
Salvia in reply to Sarasam

This is so unfair. Can you see other gps? Is this in the U.K. because I reckon you can complain if it is.

Sarasam
Sarasam in reply to Salvia

Thank you Salvia,

Yes in London. Im going to GP next week to ask him for referral to UCLH endometriosis clinic. I’ve heard they are good doctors there. Of course if he accepted to refer me . :( last time he referred me to a normal gyno who was not specialist in Endo. And he didn’t help at all. That is why I feel lonely and not understood...

Aaliyah16
Aaliyah16 in reply to Sarasam

Similar situation to myself. I asked for a referral to the specialist clinic at Guys and St Thomas’s but ended up seeing a general consultant!? I will go back to the GP and ask for a referral to the specialist clinic and I got nowhere with the general gynae and she discharged me straight away!? Why do we have to fight with these Drs??

beginner1
beginner1 in reply to Sarasam

So damn rude of him.

wabbit
wabbit in reply to Sarasam

I keep getting told by male gps that some women just have to suffer these things but no help...

The gynae dr who i finally got to see after 4yrs of trying to get referred bk said bluntly "nothing i can do about bowel problems dnt kno why theyve sent u here"... best if i just lock myself away when it starts. I hit rock bottom last month and took 3codeine 2ibruphen n half a bottle of wine cos the pain was enough n i just wnted it to stop. Nobody understands n theres no way to explain!

I feel ur pain xxx

1Tia1A
1Tia1A in reply to wabbit

Hello Wabbit. That was terrible for a doctor to even suggest that... The only thing that we have to do is live, die and pay taxes! 😐 (I and in the USA! Hola from many miles away! 😀🖑) Now...😐back to the topic. If they can put and man on the moon, surly they can do something to stop the pain! That's just crazy on the part of the doctor that made the statement. He should care enough to refer you to someone that may be able to help you. I'll bet that if you told him that, the police would be outside waiting for you when when you stepped out of the exam room. 😀 They don't like for patients to say exactly what's on their mind! LOL!!!😄

...but seriously, there are some things that greatly helped me. I am not a doctor. After dealing with this for a long time, I found out that I had to keep my bowels clear. Constipation made the pain MUCH worse. I eat a lot of fruit, veggies, seafood and fiber. Many pain medications cause constipation. I rub my stomach down with castor oil in a circular motion. At night, I even soak three small pieces of gauze in the castor oil and place one in my bellybutton, rectum and partially in my lady part. I remove them in the morning. I also take a half teaspoon of baking soda in a glass of water every morning. This is an old remedy that has worked for me better than any medication. I am not a doctor. You may want to read up on this.

You NEVER have to suffer. Please remember that...Keeping you in prayer and sending hugs from across the miles. XOXOXO

Alarna
Alarna in reply to Sarasam

I. Know how u feel ur not alone even tho we all feel that way

1Tia1A
1Tia1A in reply to Sarasam

For a doctor to make such a statement...that was just totally unprofessional and inappropriate. Hmmm...You know....🤔 it might not be a bad idea to go shopping... Buy a pair of underwater five (5 🖐) sizes too small for each doctor and suggest that they wear it for a week without taking it off. THIS will help them to clearly understand the pain and discomfort of endometriosis and the other issues associated with it. It may not be a bad idea to look for a doctor that truly wants to help you. There are good doctors to there. You deserve better treatment.×oxo

Purple500
Purple500 in reply to Sarasam

Doesn't sound like this individual has the right temperament to work in the medical profession, even if it was supposed to be a joke.

LittleG22
LittleG22 in reply to Sarasam

You need to change GPs!

I’ve had feelings of overwhelming loneliness and self pity coupled with anxiety for the future... I can’t deny suicidal thoughts when I’ve been in unbearable pain....

dogdaft
dogdaft in reply to Bambaloo

This is very relatable for me. Remember that you are strong. You have women here to support you and empathise with everything that you are going through.

Keep your chin up, you are an amazing lady

C x

Salvia
Salvia in reply to Bambaloo

it is a condition that drives us to our beds and away from others because it in some senses is still not easy to talk about with others. Particularly men in the work environment and male friends. It is important to make sure you get some social time on a regular basis and be sure that things will improve as research is focused more endo. It is hard but you aren’t alone. Can you find other sufferers near you to spend time with and share?

DLaunch
DLaunch in reply to Bambaloo

It's been much the same here. I'm actually seeing a therapist to deal with the anxiety/panic attacks.

I hope things get better for everyone.

1Tia1A
1Tia1A in reply to Bambaloo

Hey Bambaloo,

I totally get it ... It's scary and can make things seem hopeless when you have been in pain for so long without relief and without the understanding from others. ...but, don't be afraid and don't feel like your future will be cursed with misery. Doctors are human and definitely don't know everything. Maybe this is a good time to research natural remedies for the pain. You- Tube also has a lot of great information. Please check out the benefits of consuming a glass of water with a small amount of baking soda, raising the legs above the head for 15 minutes a day, rubbing your pelvic area with castor oil & applying a heating pad and eating raw ginger. These things sound too simple to work but this has done more for me than any pain medicine.

At one time, my thoughts use to take control and rule my emotions while I was in a lot of pain. Laying in bed, unable to do much and unable to concentrate on reading made time for my thoughts to take over. This was not good because the most negative thoughts come to mind and make you feel horrible emotionally as well. Please don't allow yourself to do that.

Treat yourself like the queen that you are and start doing nice things for yourself. Look in the mirror and tell yourself that you are so very special and loved by so many. Then, slap your OWN hiney and tell yourself that you are one strong and lovely lady. 😀 I started doing this for my own self and I actually feel like I can handle almost anything now. You must keep going because you are strong despite those very hard days. It will be ok. 💕💖💕💕

Jaki jest powód tego poczucia izolacji i samotności?

I feel so lonely. No one seems to get it at all!

Patch10
Patch10 in reply to Jbird86

You’re not alone! I understand and have been through the same thing. You’re stronger than you realise! X

After almost 20 year of endreometrosis . . With everything that goes with it ..I finally gave into a total hysterectomy and bilateral ovary removal that I did not want to lose, I was always poorly , depressed and hormonal.. no one ever seemed to understand the condition so I would withdraw and feel isolated.. I now have my life back!

Salvia
Salvia in reply to Lola-cola5

That’s great. I’m on the same journey and really hope it will change my life. im on the Zoladex at the moment and am finding it makes me feel so much better. Thanks for that positive news! Hope you stay well for evermore

Lola-cola5
Lola-cola5 in reply to Salvia

I'm now 4 weeks post op Salvia and I'll be honest I do still have some endo pain .. I was told what endreo my surgeon could see was removed but still may have some hiding behind other organs. I still have some post op exhaustion that will improve but I feel I still made the right choice .. thankyou for your reply

MCW69
MCW69 in reply to Lola-cola5

Sounds exactly like my journey!

Alarna
Alarna in reply to Lola-cola5

Can u ask for this of ur doctore

Lola-cola5
Lola-cola5 in reply to Alarna

You can speak to your GP about it for sure .. they will refer you onto the relevant team.. in my case I was already known very well by the gynea team.. and they had told me I had needed the op for the past 4 years.. I couldn't consent but then I could no longer cope so gave up. The gynea team will try and preserve your organs as much as possible unless it's totally necessary... so they will discuss it all with you. Good luck

I am not able to travel long distances, stand for long periods of time etc. I have turned down many offers that require me to do this. After awhile, family and friends stop asking you to join them. It bothered me at one time and I felt lonely and isolated. Now, it doesn't bother me at all. I am fine with my own company and alays look forward to visiting my family and loved ones when I am able.

Hawko1989
Hawko1989 in reply to 1Tia1A

Ive grown to enjoy My own company now as the number of events ive had to back out of is ridiculous x

1Tia1A
1Tia1A in reply to Hawko1989

I totally get it. You Tube takes me to those places now! 😂

Lola-cola5
Lola-cola5 in reply to Hawko1989

Snap

Alarna
Alarna in reply to 1Tia1A

I hate my own company but feel like I spend a lot of time in bed because of endos I'm feeling down and depressed a lot of time

Purple500
Purple500 in reply to 1Tia1A

Yes, it's the work related thing that's so difficult to deal with.

I think people believe that I’m lying when I tell them how much pain I have been in. They look at me like if u were in so much pain how can you be in work today!

Salvia
Salvia in reply to A1987

Women can tolerate loads more!

A1987
A1987 in reply to Salvia

We are strong to be able to deal with this!!!

Yes, definitely. Unless people have some awareness of what it's like in reality to live with any kind of 'invisible illness" then unfortunately they really don't have a clue and I don't have the will or energy to try to educate anyone.

1Tia1A
1Tia1A in reply to DaisyThoughts

EXACTLY!!! One thing I have come to realize is that folks can never understand certain things such as the chronic pain of endometriosis unless they experience it themselves. I got on my own nerves after constantly trying to describe the pain and negative emotions that come with it. There really are no words to describe this pain so I have stopped trying to educate those that do not know. I sometimes feel like telling them to wear a gurdle that is 6 times too small for a week (without taking it off) and this may give them an idea. 😉

DaisyThoughts
DaisyThoughts in reply to 1Tia1A

So true. So glad we have this forum to relate and connect. Sorry you suffer so too. Xx

A lot of GP's are dumb unless you can show them something like a broken arm.

Love this - I can’t be bothered either to educate people.

My feelings of loneliness not because the pains even I became disabled because of the pains

What makes me crazy live dark life locked my room and crying like hell everyday is that i will never be a mom and my fiancé we will get divorce one day

I know endometriosis suffers got pregnant but me no i have really severe endometriosis and I don’t want to get laproscopy because of personal reasons

Ivf and iui need money

Now i think about the day that we will get divorce even we are not married now but i will get married next year . It is something I cannot get rid of it i always think about it i know it is something wrong

I Hope that my god on my side and I live a happy life what makes me live until this moment is my god he is my guide

Mabye i could be a miracle

Sarasam
Sarasam in reply to Bdgjdjd

Do you live in UK? I know that NHS covers some IVF cases. Please don’t loose hope honey. I know many women with sever endometriosis that got pregnant. There is always hope. 🙏

Bdgjdjd
Bdgjdjd in reply to Sarasam

Thanks ❤️

but no I don’t live in uk

Yes i know a lot of endometriosis suffers got pregnant but with this stage it is impossible to happen without lap or ivf and iui i didn’t try to get pregnant because i am not married

But my feelings say that absolutely will not happen . everything returned even the cysts

With the cysts make it more more more difficult and it more likely impossible

I accept it but i feel sad and I think this is normal for someone like me

I try to be happy but sometimes it becomes so difficult

Sarasam
Sarasam in reply to Bdgjdjd

My thoughts and prayers are with you🙏 Miracle is always possible. ❤️

Bdgjdjd
Bdgjdjd in reply to Sarasam

Thank you so mush you are so kind ❤️😭

I feel like I'm hiding a dirty secret from the world no babies failed IVF and a broken heart

Hawko1989
Hawko1989 in reply to Bann2018

Im sorry to hear of your pain. It is indeed heart breaking. Im too anxious to try ivf at present as im too scared of how I Would cope should it not work. No children is a massive void that never completely goes away. X

Bann2018
Bann2018 in reply to Hawko1989

I found IVF very stress full theu kept saying they where going to cancel the treatment as k was such a low responder then made it through by sheer look by my womb didn't hold onto the fertalized egg. I them supply when to a fortune teller for some hope she told me my womb will never be strong enough to carry a baby to he and I need to move on xxx

Bdgjdjd
Bdgjdjd in reply to Bann2018

Is it only endometriosis that prevents thr pregnany ? Did you have pcos ?

I hope you can get pregnant soon i try to save my money for ivf because i have stage 4 endometriosis

I have read that iui is better for endometriosis

Bann2018
Bann2018 in reply to Bdgjdjd

np never tired I IUI my doctor said no as hubbys sperm. count is my low amh !!!!

Bdgjdjd
Bdgjdjd in reply to Bann2018

Did you mean that your husband has low sperm count if you mean that ?

I think the sperm issues makes the journey more difficult

Bann2018
Bann2018 in reply to Bdgjdjd

no his sperm count is high and mobile my egg jist didn't implant. thinking of going down the donar road as my AMH is so low xx

Bdgjdjd
Bdgjdjd in reply to Bann2018

Great that there is no male issues

Amh is effected by laproscopy and age

Maybe you had a surgery for your ovaries which made your amh is low

If someday you decide to not have ivf or iui make sure you have open Fallopian tubes and try naturally

I read about someone who had failed ivf and have endometrioma on her ovary and she got pregnant naturally after faild ivf

I am as you have stage 4 endo Hope someday we get what we want and become great moms ❤️

Alarna
Alarna in reply to Bdgjdjd

I have both pocs and ends and have no baby

Bdgjdjd
Bdgjdjd in reply to Alarna

After reading most of the people who have endo and pcos that i read about them got pregnant more than who suffers from only endo there is hope for you

Diet usually works for pcos and endometriosis

Did you have regular cycles ?

What were your symptoms with pcos ?

I'm so sorry for your experience hun, this is not your fault its not dirty it just sucks that we got defective organs.

I've been thibking all week what causes it. Was it the contraceptive pill I took from 16 for heavy periods ..diet...what did I do to hurt my womb.....

Are there any answers on why cells go rogue? I had Adenomyosis Endometriosis and Wolfian Duct cell proliferation and mine is in the sky now away to the land of lady parts in the Sky.

X

thank you it's so good to be in touch with people who get the problem xxxx

Yes because the world around us including family GP's seem oblivious to it. I ended up going private and had felt compelled to write a letter of suggestion to my practice. I named all the lady GP's who failed to referr me for investigations and told them exactly what was found inside me. I hoped other women were not dismissed for servers pain the way I was. I even named the lady GP who said to me Ovulation is supposed to be painful....whilst I told her I was falling down in the steet...

Told then all how heavily I drank on painkillers.

Hate yo say it took a man to listen to me and set up 3 referrals to rule out my pains cause.

My GP is a man very thorough and not a woman who maybe saw my face with a bit of make up on and assumed I was well enough to apply mascara. The judgement I'm sure they use is flawed.

Alarna
Alarna in reply to HellyLlewelly

I really wont to no what corsed it or was it me that did it to my body too

I can completely relate. I'm not open about living with endo because my broken heart of no family needs protecting and due to that it does feel like a dirty secret.

Alarna
Alarna in reply to Bann2018

Snap xx

Friends started to think I was flaky and had other reasons to cancel plans. I lost friendships over the years. Intercourse was painful so I would often just get in the mood by being on painkillers and too much drink to just accommodate my partner. I couldn't feel like a failure in that way.

It did affect me with anxiety fatigue and depression, I felt cursed. I'm early doors post hysterectomy and I don't know if it has improved my condition yet as I still have pain... I feel like a housebound recluse and my confidence is low to go outdoors.

I answered ‘no’ thinking about just the pain and symptoms, because my husband, friends and family have been very supportive, especially after surgery, and I am able to live my life most of the time. But if you would also count the infertility caused by the endometriosis, yes, it is isolating and heartbreaking and lonely.

It was a long time ago, but had dreadful treatment for two years by the 'three witches' but super treatment from the consultant, (when they eventually referred me) who looked after me for the next five years.

Being in pain, feeling fatigued and low has meant that I often opt out of social scenarios or have to leave early. I’m sure a lot of you have felt similar. ☹️

1Tia1A
1Tia1A in reply to D3107

I totally get it... Whatever you do, do not allow yourself to become antisocial. Having to turn down offers to attend events and just not feeling well, in general, can cause you to want to be alone. In my case, I got accustomed to being alone. I know that this is not good and I am trying to change that habit. Sending hugs

D3107
D3107 in reply to 1Tia1A

I’ve been the same but I’m trying to push myself out of my comfort zone or invite people to my house so at least I can still relax and socialise. It’s hard isn’t it but we can do it. Hope things change for you too :)

I'm really struggling with this - I was put on the pill at 14 due to really bad periods and was on them for 12 years. I stopped taking them 18 months ago to start trying for a baby but I don't want to tell everyone I'm trying as most of my mates just won't understand and think I'm too young. Since stopping I've discovered my endometriosis and it's so isolating not really being able to talk to many people about it. My mum's great (she had a hysterectomy due to her endo) and my partner is wonderful but other than that I feel like people just don't get it.

Hi to all you poor sufferers reading Health Unlocked. Endo unfortunately a silent life wrecker, had got the better of me and after many many years of fighting, arguing and telling docs and consultants alike that I just could not go on with the pain anymore, I was eventually believed and 3 exploratory ops later they finally decided that I had endo which adhered to my bladder and bowel. I had 1 week out of 4 with not much pain, ovulation an absolute nightmare and not being able to walk was excruciating. Painful sex, too painful to even go to the loo and heavy periods where I used to wear 3 pads and still leak. My life as far as I was concerned was over. I've never wanted children and that was the hurdle I kept having to try and climb over before I fell flat on my face again because nobody would take me seriously. The worst treatment continued for over 26 years until I met with another consultant, who by all accounts listened to me, didn't judge me not ram more excuses or meds down my throat and asked me if I wanted a hysterectomy. I honestly cried with relief when he said that, I agreed, had complete hysterectomy and both ovaries removed. The next day I was discharged but not before I found the most fantastic surgeon who made me what I am today. I hugged him and thanked him for giving me my life back. So to all you sufferers out there, please stand your ground, insist for 2nd opinions if you have to, I know the op isn't for everyone, but those considering it and who like me doesn't have any desire for children, I would thoroughly recommend it. Just make sure the right people listen to you. I named my condition to make it easier to just say oh so and so is playing up, so for the friends family and work colleagues understood I was in pain so didn't ask questions or dug about for answers. Just remember none of you are alone. Wishing you all the best of luck in obtaining solutions and treatments right for you. :) x

1Tia1A
1Tia1A in reply to MooLoon

MooLoon, you have just lifted my spirit and given me the motivation I need today. As I write this, I am in bed in severe pain from the belly button down... I needed to read this as I experience days that I am not able to do anything. I KNOW that you have been through so much for so long. I am so glad to hear that you are feeling so much better! 😊

MooLoon
MooLoon in reply to 1Tia1A

Sending big hugs love and best wishes to you. Please don't suffer in silence, fight for your right to be pain free. Even when you feel like you are at the monent wretched with pain, remind yourself that there are solutions out there ehen you are ready to pit an end to your suffering. Wishing you all the best for your pain free future xx

1Tia1A
1Tia1A in reply to MooLoon

Thank you Sis! I am determined to get better and pray that a trustworthy cure will be found so that this is no longer an illness that causes unmentionable pain. I just can't understand how science can put a man on the moon yet women still suffer from endometriosis. I'm usually not irritable but, after several days of unending pain I get frustrated. Now that I think about it, this it's also why I seclude myself. I don't like for people to see me this way. Thanks for understanding. This means a lot. 😊

Yes i do as feel like no one understand even when u explain everyday

I always say i dont wont them to over but deep down i do but now i carnt

at work and with friends who just dont understand makes me isolated

For years it felt like most people around me didn't believe me. Especially my husband and in laws. Even now they keep going on about positive thinking.

family didn't believe i needed help with my pain, and my work sacked me. Now its a big bun fight that whether I needed help and more understanding from my family/work, now that I've done lots to get myself better.....too late mate.

When I was at college and with family as well.

most of the time x

With family and friends!

When I was at University, different doctors told me that my pain was actually caused by depression. I kept telling them that I wasn't in pain because I was depressed, I was depressed because I was in pain. Eventually, I believed them and I felt like a very messed up person for years. Lost confidence and left University. (Psychological pain isn't a good enough reason to be a week late handing in a first class assignment!) Had employers ask me how I couldn't walk when on a period. Very unkind.

The loneliness that I feel is that there is no immediate help for the pain

A dr once told me that it's a part of being a woman 🤦‍♀️great thats helps and also gave up work because employer didn't believe me i could bearly walk and some family members just thibk your putting it on until you have a operation then there like oh i didn't realise 🙄

Some of my family and friends think its a made up disease and it'll disappear if i lose weight and do more

I've heard the same thing

Yes all the time. Especially with my last gyno. She told me I was too young for it to be so bad

Yes

Dr once said to me think you have Medical Anxiety come back within a few weeks if you still having problems. Because I was back and forth in pain for 2years

Often I feel isolated by my husband or friends. They don't purposely make me feel this way but they don't understand the condition or how living with chronic pain and fatigue literally changes you as a person. I know they don't mean to be dismissive of my issues but I think that as I have been unwell for 2 years or so that they are a little bored of hearing about it so I don't talk about it anymore, I try to keep my pain to myself. That is why this forum is so important, I am glad I have found it and can share with others that understand how I am feeling.

I have however been very lucky with my employers, my manager has been fantastic and so understanding which I know isn't always the case for many endo sufferers x

I have pain and no-one believes me in my family except my husband.