Waaaaa!!! This sounds desperate but I really need an endo friend. None of my friends really understand.
I’m 43 ... maturity level about 13 ...
Anyone wanna be my friend?! (Not desperate in the slightest ... glad you can’t see my insane look ;))
Waaaaa!!! This sounds desperate but I really need an endo friend. None of my friends really understand.
I’m 43 ... maturity level about 13 ...
Anyone wanna be my friend?! (Not desperate in the slightest ... glad you can’t see my insane look ;))
Hey, your post made me giggle Where about are you on your endo journey?
I'm 47 doing prostap injections waiting for a hysterectomy and removal of bowel endo and possible diaphragm endo.
Hey xx well my first laparoscopy and ablation was about 4 years ago. Then again about 2 and a bit years ago. It keeps me pain free for a while but pain has been returning over recent months so I’m expecting the inevitable again. But I’m a bit scared in the current climate to seek any medical help at all. I just wish my friends understood the pain and the speed at which it can come on x
You must go back to Dr's and get the ball rolling again, the backlog of patients will be huge and better to be on the list now than to be in desperate need of being seen.Have you had a look on pinterest for endo related stuff, there are lots of things on there you could show to friends that might help them understand and some of it can be quite funny which will lighten the situation, especially the cartoon/line drawings.
I’m lucky that I have private medical through work so I know I could see someone quite quickly if need be but I’m worried to out myself in a potentially dangerous covid situation if I could hold on a little longer. Some days are soooo bad. I really may look on Pinterest. I need to educate friends. They seem to think I should ‘just have a hysterectomy’ and be done with it. Big sigh
That's good you have access to private care, You really shouldn't worry about seeing someone though, the hospitals and all staff have strict rules in place. I went to hospital today for prostap injection, had to sanitise hands, wear one of their masks and had temp taken before I even got to the consultation room.I had a friend like that till I explained it's what the endo has attached to that causes the problems, and it can produce it's own hormone to remain active even after a hysterectomy so it's the endo that needs removing as well.
That’s put my mind at rest a bit. With the announcement tonight though I wonder if I will just need to hold on a few more weeks though. The pain is just horrendous at times though and I feel I can’t carry on. Yet when it subsides then I feel I can of course last longer.
That's the way it goes you try and justify not needing to be seen but deep down you know it wont get any better...yet you find yourself saying I'll give it a bit longer!!!Can you get anything stronger from the GP to help with pains?
I will see if I can. I do tend to suffer silently for too long x
Yes I think we all do, but there isn't any need they need to know your not coping with pain to be able to help you, there's plenty of pain relief you can try to help make things bearable.
I’ve tried codeine, tramadol and diclofenac but I don’t really ever see much improvement. Diclofenac was I guess the best for me but I tend to use heat and patience more than anything now. Have you found any wonder drugs?
Oo! I wish I'd found a wonder drug!!!!....I had diclofenac suppositories once and they helped at the time, but currently using tramadol which makes things a bit more bearable most days.Couldn't be without my wheat bag though!!
Have you tried doing any diet changes to see if that helps with symptoms, a lot of people recommend it on this site?
I’ve tried. A little bit. But any changes too drastic make me even more fed up. I have to say I love my extra long Warmies hot water bottle. It is the best!! Stays so hot and the weight because it’s so big helps too!! My hubby has just brought it up for me now
Hi.Iv had dihydrocodine 30mg twice daily and it worked a treat.The problem is you get addicted so easily then can’t function without it...and keep needing a higher does.Decaptyle injection once a month is another alternative.I find that the less milk and meat i take the better i feel.
Hi, I'm 43 and like plotments @ I am having prostap and awaiting hysterectomy and removal of bowel endometriosis. I've recently had a CT scan due to possible diaphragmatic endometriosis awaiting the results. It's hard for friends to understand what you are going through as they have not experienced your pain or symptoms. The posts on here have helped me since my MRI diagnosis Sept 2020. This is my first reply on here but regularly read and look for advice. Hope you feel like you have friends here 😊
Awwww I’m feeling honoured to get your first reply xx a big thank you for that. Do keep us posted with your results and next steps. It’s nice to be able to support each other xx
I wanted to reach out to you as I can relate to people not understanding how endo affects us.Will keep you posted with results and definitely support each other.
If you don't mind me asking how long have you been on prostap for?
Do you feel it's helping with any of your symptoms?
I don't mind you asking at all. I had my first 3 monthly prostap in October, due next one this week. I had a flair up of symptoms for 2-4 weeks when I started it. I've had a reduction in endo symptoms but an increase in bone/joint pain, flushes, insomnia and some severe headaches. On the whole I've felt better on the prostap. I'm thinking about starting tibolone this week as so far haven't taken it as I have family history of breast cancer. How are you finding prostap? When did you start it?
Had my third monthly injection today, I was given HRT from the start as I did prostap a couple of years ago and side effects were horrid, Haven't had any side effects but like you endo went into a major flare up, had to get an ambulance and go to A&E at one point things got that bad. I'm still trying to work out if it's helping or if things went that bad on flare up that now it feels bit better...does that makes sense.
Hope you get some relief now you've had the third injection. I know what you mean about the flare being so bad that it doesn't feel so bad now. Do you have a date for your hysterectomy? How long have you waited? x
Haven't a date as yet for op, next step is appointment with consultant, examination and discuss /sign paper work for op. I've only spoken to him over the phone but he's been using the information gained from lap in Feb last year. I was referred to him last July by general gynae after follow up appointment.Have they discussed your options with you yet or do you need to wait till results are back from diaphragm?
Are both of you under NHS care or private? Your situations are super interesting. I must say the pain is sometimes so unbearable I wish I could just get urgent A&E help. Were they kind to you in A&E? Call me paranoid but I went to A&E once (not endo related) after a car accident and they were really horrible to me! And on the two occasions I’ve taken my kids (once each) my experience there wasn’t great either.
I'm under the NHS. I totally sympathise with you on the pain front, sometimes it is so bad I feel like my womb is going to fall out 🙈 one very unhelpful and unsympathetic consultant told me to go to a&e if I wasn't happy with his care or ask my GP to admit me to a surgical unit! x
I'm under NHS. A&E can't really do anything for endo patients other than give you pain relief. The paramedics were fantastic and the nurses in hospital, I wasn't so impressed with the Dr I saw but I was pretty fed up at that point so he my have got the worst of me!!!
hope your feeling better after chatting on here tonight?
Hope you don't have to wait too long for an appointment with consultant. It's hard with the current situation and surgery being delayed. I saw the BSGE consultant in September who discussed the results of MRI; endometrioma, adeno and DIE to bowel and Pouch of Douglas, extensive adhesions sticking it all together on left side..I haven't had previous LAP/surgery but saw general gynae 5 years ago who said probable endo, didn't offer any support, just get on with it 🙄 BSGE consultant has listed me for hysterectomy, ovary removal and bowel excision/resection. I mentioned shortness of breath, shoulder pain so he suggested CT to check for endometriosis. Not sure if it will change surgery 🤔 no date for surgery yet x
You lovelies have really cheered me up! If anything I don’t feel so alone! Honestly feel free to direct message me anytime xx
Our situations sound so similar although I've already had two laps.How are you feeling about surgery?
I think I'm more concerned over the bowel excision and diaphragm endo than having all my bits removed!!
I hope your not waiting too long either
They are similar! I'm very nervous about the surgery but like you I'm most worried about bowel and diaphragm, as well as the recovery. Hopefully we'll all get some relief soon x
Hello I will be your friend ♥️I know how hard this illness is, I have endo and adeno and I am 39.
People don’t understand at all as they don’t go through this. Sure my friends get fed up listening to me.
Seek help from your GP as they are still dealing with other illnesses and not just Covid. I managed to get surgery last year in the middle of the pandemic. X
Yay. Hello new friend! I tried joining Facebook ‘support groups’ but some are a little scary and I wouldn’t say very friendly. Sometimes seems like a competition to have the worst symptoms. All I’m after is mutual sympathy 😃😃 how was the surgery experience mid pandemic?
Hi it’s way better on here, people don’t try to compete and we actually help each other. Apart from everyone dressed in full ppe the experience was ok, I had endometrial ablation. Lots of cleaning on the ward & can tell the staff are so stretched, they never seem to stop. How long have you been suffering with this illness for? How do you cope? Xx 😘
That sounds well organised at least. Undiagnosed I’ve been having problems for 20 years (gosh, is it really 20 years?!) but only diagnosed about 6 years ago. I had my appendix removed and then two subsequent surgeries. The surgeries really do help and keep me pain free but you can so tell when it’s coming back and the last few months have been leaving many tell tale signs. I just hate the excruciating pain that comes out of nowhere and takes your breath away. I don’t cope that well with the pain as nothing seems to help really. I just try and cope with hot water bottles and time x
Hi endo, I can be your friend too! Stage 4 endo removed via lap surgery in 2019 and its just started coming back in the middle of my 3rd ivf attempt. I had my appendix removed too. I’m so sorry for the pain you are going through, it sounds execruciating...
I have had quite a few friends going thru IVF, so they understand the infertility side of endo (which is the side most affecting me over the past years) but def not the pain side...
Hey. Oh gosh bless you. I’m keeping everything crossed for your ivf attempt. I have had three friends go through ivf. I know it’s an emotional rollercoaster. I was offered help to conceive years ago and then weirdly things happened magically for me. I do feel incredibly grateful for that and count my blessings ever day. Do keep me posted on your journey. I know it’s difficult x
B12 is a vitamin which is found in meat and dairy products so as you are
eating a balanced diet.
Should not have a jab I am having it because of my medical condition which
came suddenly out of the blue in 2012.
Still suffer from Endo but had to cancel some specialist appointments
as had another very bad kidney infection with flu on top.
My Gp was wonderful and took their advice but since then. Have to
do some appointments with my dentist as a fall damaged front teeth
now got 2 tooth to be taken out as the crowns have failed.
Life keeps giving me more problems to deal with but at least I
Can walk gently now when I need too.
I’m 38 and have been trying to conceive since 2009 so didn’t want to take anything out.I had a few procedures to scrape but they grew back aggressively and now am at stage 4.At this junction am trying my last ever IVF with donor egg and my consultant is of the opinion that a hysterectomy is the way to go afterwards and this is saddening.
Oh gosh. I really really hope this works for you. I’m keeping everything crossed. As I mentioned above I’m feeling very lucky in that respect as I must have had a lucky break. I feel fraudulent sometimes complaining when I know others have additional worries too with things like ivf. I really do hope this works for you. Keep positive!!!!
Lucky is a nice feeling as there really are worse things.Thank you for your words of encouragement.
Hey, I can be your endo friend I know exactly what you mean, it definitely helps to talk to people who understand! I was also diagnosed around 4 years ago. How’s your pain atm? Xx
Hello!! Mine is pretty dodgy right now. The worst thing is sometimes I can be fine. Then I do something simple like stand up and this pain comes out of nowhere. Also have this pulling pain now deep in pelvis that’s always there but most noticeable if I have a wee (or poo).
I think I’m your long lost twin 🤣
😂🤣 (poor you ;)) hello! (happy wave)
Shite isn’t it!! 🙄 Never gives up.... the gift that keeps giving!!! Things have gone a tad crazy for me recently! I had some biopsies taken grim my uterus just before Christmas, they then had a multidisciplinary team meeting yesterday and called me this morning to say they need to see me on Friday morning at the hospital 🤦🏻♀️
Hi like the others have said it’s best to get onto to this as soon as because things tend to take time and again as others said I had endo excised in Sept and it was all very good regarding the cleanliness and protection. I had a hysterectomy around 4 yrs ago and it helped massively with bleeding but didn’t cure the endo , still so glad to have had it as it stopped all the flooding out that I was getting and lots of endo removed at the time but it’s not a absolute cure. Good luck with it all, nobody understands fully unless they are living thru this awful disease. It’s terrible but try to stay positive. I found walking helped xx
Hi, Unfounately No!I joined the Site to give my knowledge. I think you will find most people with Endo are deep in their own pain and just trying to get through each day, whether it's managing to see friends, keeping their children fed, keeping their partner or employment and facing treatments and Hostipal visits!
Yes we all would like that kind of friend but it's not easy!
The problem with Endo it's unseen, it comes and goes hr to days. People generally don't want to talk about illness or seeing a friend suffering!
With me over the years I found friends stop inviting you to things cos you cancel or just talking about Endo, you're no fun! People like to chat lightly about nice subjects!
Unfortunately as well often we look perfectly well when we are in hidden pain. People give more sympathy for a broken arm!
The comment:'You're always ill'.
The comment: ' I think you just make this up in you're head'
The comments: behind your back 'She's a bit werid' or 'She' s always skiving off work'!
As a seriously suffering person with Endometriosis I have overtime learnt you to grit up! Live with it and talk to yourself and to the Endometriosis, how you are the boss of your body, Pace yourself and be good to yourself.
❤️ ❤️ ❤️ ❤️ ❤️ ❤️ ❤️
That's fair enough ... I definitely see there are multiple ways of dealing with this condition and what works for one may not work for another and vice versa. Most the time I do just deal with it all myself (hence my post) but it was just on the off-chance that others on this site could help. Definitely wish you all the best on your journey.
At the moment we all need all the friends we can get-
Did not think that you are mad etc- I am older than you by over 10 years.
Currently having B12 injections for a condition which came on suddenly in 2012.
Have to live on no salary- as job hunting- as a lot of people are doing can not claim
any help job seekers- not furlonged as resigned last job as girls green with envy
Hi pinkmice, I’m sorry to hear you are job hunting. There is so much pain and struggle going on all around us right now....
Can I ask about the B12 injections, are they to help mitigate endo? I have stage 4 endo and am taking B12 vitamin supps because of my IVF process - I didn’t know B12 was good to frighten off endo too but will be very pleased to hear if it is!
All the best of luck to you xx
Hi,Yes I had to finally leave my great career 15yrs ago. I have a Lodger and live alone.
Still in serious pain, no Opps I'll need a pevic clearance, lose bladder, perhaps part of bowei or all, but the Endometriosis on my lungs too. They said I will have more issue by a Opp and Endometriosis will still be there with new pain and peeing or bag changing! Yes the Lungs I need!!!
Well my Endo has become a little better since menopause but have days in bed, days when I can't walk far without extra pain and tummy swelling or drive long distances,
I live on strong painkillers!
I am happy but lonely. I research Endo and cancer online just to find answers.
Happiness comes from within. That was a hard learning curve trying to keep everyone happy and trying to impress others by pushing myself beyond most people's efforts.
We all need to be extra careful at the moment.
So try laughing to yourself!
Oh gosh. I’m glad you’re happy but don’t like to think of anyone lonely.
I was feeling alone in the essence of no one understanding the pain which is why I popped along here for the first time in ages.
You have so much going on, bless you x
Definitely laughter is a great medicine.
Wow - yours came on so suddenly? Not nice :\ What were these last girls green with envy on? Not the pain I hope!!! Glad you don't think I'm too mad!! Luckily I am working but with the current situation working from home but in a way that's nice - if I need to get up and get a hot water bottle then I can.
Hi I need friends too. When I lost my jobs due to Endo I lost friends too but I’ve never been that social but if a recluse really. I’m beyond surgery after 3 lots including the first diagnostic one in 2008. I’ve had new symptoms and I sone worsening over last few months and I put off talking to gp for a few months. Luckily I have a very good gp after years of rubbish ones. I’m now officially peri menopausal. Yay 🤣🤣just to keep life interesting
Oh dear. What a mare. So are they saying they can’t operate any more?
Glad you’ve got a good GP. I never seem to do well there really. Well there’s one lady I like but she’s always fully booked.
I’m too complex as on bowel.
Nothing they can do?
I manage it or take hormones which give me side effects and is worse than the Endo. The pain isn’t that bad mostly although it’s increased this year. It’s all the other symptoms that are debilitating. I have yearly consults with Endo specialist and urology as it’s on my ureter and caused reduced function in left kidney.
I’ve had the she’s always ill, it’s all in your head comments which are hard to take at first especially as they are made by family. You have to have a thick skin to cope with it. I know other family members have it but with differing symptoms. That helps as the women in the family are more aware now and more understanding. But the men mostly don’t get it at all.
My symptoms are more unusual which took a few years until they were officially linked to the Endo and hormone imbalance. Having it in writing and in my medical notes has made the biggest difference to me mentally. It’s exhausting and soul destroying having to fight every step of the way to get diagnosed, treated and then having to educate family and friends etc about the illness.
Hi there, I'd like a friend too! I'm 35, and our journey sounds similar. Mine started with emergency appendix and then two endo surgeries in that same 12 month period and another a few years later.
I'm 35 going on 90, physically I think😂. But always looking to be friends with like minded women
Oooh we’re very similar!! Before I knew what the pains were, I was petrified I was dying. Especially the appendectomy situation. I was so scared I wouldn’t let them operate so was on a strong antibiotic drip for days. I then decided they could remove it. They did say it had been infected as they could see that somehow. Clever bods eh? But yes my pain returned and they then deduced the endo. Do you have children?
Oh my appendix ruptured because I didn't go to Ed because they had told me to stop coming with abdo pain. Didn't know I had endo at the time. Kept going with severe pain. That time I ignored it because they said it was just period pain and could have died!
I have one baby. After many years of trying and many losses I had a rainbow baby. She's 6 months old now.
Sorry for the delay in replying. It’s been a busy weekend. Oh wow a rupture?! Eeek!!! Luckily mine was all calm and pre-planned in the end.
I have two daughters. I feel very blessed. A year or so before having the first I was told I’d need help conceiving (though they didn’t know about the endo at the time ... this was due to PCOS) but at the time I was about to start a new job so I said I’d be back in 6-12 months. Then I conceived naturally! Then a couple of years after having her I had a miscarriage but then was lucky a couple of months later with my second x
I got diagnosed with endo towards the early end of last year. I had my first lap in November to remove endo and they also removed some adhesions from my liver and bowel.
I had a coil fitted as they said this can help with pain.
I have had a slow recovery from the surgery which has been hard as I was very active before. I did however get on my bike last night (fixed indoor bike trainer) for the first time which was good so putting a slow back to fitness plan in place as it helps with my mental health.
My hubby is amazing and supportive.
I'm 38 (matrutiy level 10-13 🤣 with occasional 26 year old drama tantrums)
A stranger is just a friend you haven't met yet, so hello!
How are you keeping? x
This evening is horrendous for me. Pain I don’t know what to do with. Arggghhh.
Awe I'm so sorry to hear you are in pain.
I have a very close relationship with my heat/tens machine (pre lap) not really needed it much since. I have a rechargeable one so I can pop it on, tuck it in my waist band if I need to walk about, it just lay on the sofa. It was a god send!!! Would highly recommend
There is also some endo suitable yoga on YouTube (not for when your in alot of pain) but I love a child's pose when I'm feel rubbish!
Hope you feel better soon my lovely. Xxxxx
I understand what you’re saying. I mentioned to my mom how bad my endo has progressed since my surgery to remove it 7 years ago. My mom who is a nurse asked me “oh? I thought that was over?” I almost fell over. I wasn’t upset with her. It just gave me a reality check on how little people understand this disease. And the main reason I signed up to this online group is for support that is hard to come by in my local social circles. I have close friends with lupus and RA, but they don’t have endo and so only partly understand. But others with endo get it. And I find that to be highly therapeutic. Just to have someone else who gets it.
Absolutely totally get what you’re saying. I mean some of my friends are sympathetic and they say the right thing or try to but they just don’t get it. I’m scared to even tell my mum it’s back. She doesn’t talk about ‘personal issues’ and she’s currently very busy caring for my poorly dad.
I hear you. We also dont want to burden those around us. It seems everyone has their own issues. Prayers for your dad. I feel guilt sometimes because my problems aren’t as bad as some. But it’s healthy to vent. Happy we have this forum. 🙂
😂see how many friends you have accumulated in a few hours and we all understand xx
Hi endotheline.I'm really pleased to see so many people getting in touch to offer their friendship, it's a really important part of what this forum hopes to achieve. I hope you are now feeling like you have lots of endo friends.
You may be interested in finding out more about our support groups, we have groups all across the UK. At the present time they are only able to run online meetings and to offer support via their private Facebook groups, however in normal times the groups hold face to face meetings, they are a great way to meet other women in your area with endometriosis. You can check to see if there is a group in your area on our website endometriosis-uk.org/find-a....
Thank you for reaching out to our community
Lynne - Endometriosis UK
Hi there. Yes I’m so glad I posted. Thank you for your post too. I had actually checked the support groups but sadly none very close to me. I’m in Berkshire.
So grateful for Endometriosis UK. A while ago I did a charity bake sale at work. Half the proceeds went to Macmillan and half to Endometriosis UK. It will be nice when we can run bake sales again
Thank you so much for thinking of us when you did your bake sale! This sort of fundraising is so important for us as a small charity. Let's hope it won't be too long before you can do another one!
I run a shop and have a little endo uk box where all the loose change at the end of the day and peoples pennies go, we send around £100 -£150 a yr to endo uk just from this. If everyone puts a box where they work it would soon add up. We must do what we can to keep the help and support. Being a member is only £15 a year too. x
That is such a good idea about the endo box. I am definitely going to do this when I get back to work. I am currently shielding because of covid and a lot of health issues as well as the endo.
You girls totally cheered me up lovely to know you’re all there x
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