Cannot go on: Hello all I hope you are all... - Endometriosis UK

Endometriosis UK

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Cannot go on

Rockandroller92 profile image
Rockandroller92

Hello all I hope you are all coping better than myself. Not looking for sympathy or playing the victim card but I am at the end of my rope.

Symptoms since Thursday -

- extremely tired and cannot seem get rid of tiredness no matter how much I sleep.

- pain when urinating deep inside as well as when passing BM. BM now diarrhoea like ( sorry tmi).

-unexplained weight loss, only noticed as trousers keep falling down.

-pain after intercourse

- headaches which also turn into migraines

- low mood

- pain in back lower and radiates to top

- pain in pelvic area and abdomen under belly button, extra pain on right side near right hip

- foggy head and weakness

- even with omeprazole I have gastro pain and heartburn

Anyone else have similar symptoms? I had to get sent home from work again, my absences are already being monitored just don't know what else to do. Awaiting a laparoscopy and coil fitted but this has already been on hold since Feb last year. I understand there are more cases worse than me and that the pandemic has made things even harder and I respect all the NHS are doing but I have been panned off for 5 years now and I cannot keep "living" like this.

Thanks all x

28 Replies

I'm sorry to hear how much you're struggling - it's shocking how many of us are! I can closely relate to all you have described as I know many people on here will. It helps a bit knowing others are going through it but ultimately it's a fight we face alone. I went back to my GP and just told her how bad it was all getting. She wrote to the consultant to try and speed things up. I don't think it worked particularly but there is something healing about feeling you are active in it and not just passive. I called the hospital regularly to find out where I was on the waiting list. I can't offer a silver bullet I'm afraid but do hang on in there and in the meantime, try and look after yourself and treat yourself a bit if you can!

Thank you for taking the time to respond. If you don't mind me asking what has been your verdict on it all. Should I be pushing about them checking endo in bowel, bladder or kidneys as this is where the pain is the most.

Hi. It’s such a battle with endometriosis and the current situation must make it even worse. What medication are you taking? If you suspect bowel endometriosis I found the endo diet really helped to at least keep mostly on top of my pain before surgery, I was that person that went back and to with the gp and felt on first name terms with the specialist pa. xx

Hi thanks for your response. I am currently on omeprazole for the ibs symptoms, tramadol when the pain is really bad and they have now put me back on buscopan. Is there anything I should ask to be on? My GP hasn't been the best support mechanism, when this all started he told me it was in my head. So ever since then I sometimes do think it is especially every time I am admitted to hospital I get panned off and made to feel like a drug addict looking for a hit :(.

I would push them on it, yes. It's having a huge impact on your life. Good luck x

Hey, I have experienced most of those. You're not alone, I have wondered many times how I can live that.

Has your gynae referred you to a colorectal surgeon? This sounds like it's very important for you. When they operate a colorectal surgeon with understanding of endometriosis should be present.

If its general gynae performing the surgery they don't normally do anything if there's bowel endo, they don't have the expertise. If you're at a bsge centre then your surgeon should have the skill to excise endometriosis off your bowel.

Has your GP checked for a UTI? Really important as it shows on the record the pain happened without an infection.

There's something called lanzoprazole which your Doc may prescribe. Its stronger than omeprazole.

We and many other conditions have been hugely affected so understandable how frustrating it is with the NHS at the moment.

There are lots of natural things that help with endo pain. I have stage IV endo and a lot of it has helped me. Feel free to send me a private message if you want the research

Best wishes

Thank you for your response. I will speak about this with my GP on Thursday when we have a phone app. I'm currently looking at research being done In lothian but it's too far away from where I stay. I just wish I could do all the things I was able to before. :(. How long did it take for your diagnosis and how are you managing pain ? Sorry for all the questions x

Will send you a private message later with all the details. Endo UK don't like links to other websites posted publicly. No need to apologise btw, happy to help x

TennisAM profile image
TennisAM in reply to TennisAM

I should have also said, has your GP ruled out Pelvic Inflammatory Disease? This can cause a lot of your symptoms, such as abdominal pain and deep pain during sex/after sex. It was assumed a friend with endo had rectovaginal endo, at the operation there wasn't any recto vaginal endo. Some of the abdominal pain was PID and painful sex was that too. Really important they investigate other things. She didn't have any other obvious PID symptoms like funny discharge and still had PID. xx

You are a star thank you so much for all this insight. No one I know has this and I feel like a burden. I just want to be understood

😘 I've sent you a private message with all the info xx

Hello Rockandroller, I am sorry you are struggling, I recommend the Be you strips off Amazon, and some CBD balm, I have found these to work quite well. Also try a heat pad as that can help. Hope you feel better soon. Sending you light and love

Thank you for this, I really appreciate the kindness. Once paid I will be going daft buying all these home remedies. I just want a normal life x

I'm really sorry to hear how much you are struggling. Endometriosis is such a horrific condition, full stop.

I am concerned that omeprazole is not helping your heartburn and indigestion and that you are having unexplained weightloss. I'd suggest monitoring:

- Are you eating with your medication? I find if I don't eat when I take my meds that I suffer for it. What you eat with them could also play a factor.

- Keep a food diary for a week and see if the issues you are having with heartburn/indigestion/upset bowels are having an effect on what you are consuming, without you realising it.

I also suggest you raise these symptoms with your doctor and ask to have them investigated in case they are related to something else that isn't being picked up on because your endometriosis is demanding all the attention. They can, in the meantime, send you for blood work and an ultrasound and/or MRI to see if either pick up any suggestion of anything contributing to your symptoms. Blood work can also be done to check your vitamin levels too as if you are low in things like vitamin D and/or Iron (for example) this can contribute to your fatigue. They may also be able to nudge your specialist to try and get an idea when you can hope to see progress with proceeding with your lap and coil.

Whether someone else has it 'worse' or not doesn't take away from the fact that you are suffering and need care as well.

For your headaches and migraines I can't recommend Kool n Soothe pads enough. They sell them in most pharmacies (including in grocery store pharmacy sections). They have a minty scent and you stick them to your forehead or the back of your neck (depending on what works best for you) and they turn really cold. They last for hours.

In respect of your pain, have you tried using a tens machine along side your current pain meds? You can pick one up at a local pharmacy like Lloyds or online for about £20 for dual wire one (I recommend getting the dual as you can choose to use 2 or 4 pads at a time which can be great if you, for example, have lower back pain and it radiates to your legs). If you find it helpful replacement pads can be purchased online and they are cheapest bought in bulk. I prefer the Healthcare World replacement pads as they stick well (some brands peel off super easy which can be frustrating). If you've not used one before, try moving the pads around until you find the right spot for you as I find even shifting them a bit can make a big difference in the amount of relief.

Do you use a heat source for pain? My preference in microwave heat bags (I get mine online through Etsy. The woman I buy from makes me custom cases so they can be thrown in the wash. My favourite are ones that are divided into sections so the insides stay evenly distributed and I favour flaxseed). Some woman prefer a hot water bottle and the YUYU body bottle is really popular as it can be tied around your waist.

I wish you luck in getting seen sooner than later and having your treatment move forward in the near future. Hopefully something above helps in the meantime.

Thank you for all this information. I have been sleeping all day. I haven't eaten and I am just still so tired. I haven't been this lethargic before and I have had loads of flare ups. The weight loss has kind of went down since I decided to stop taking the pill to see if it would help my symptoms and it did for a couple months but now my pain and tiredness is taking over my life. I have a phone app on Thursday and will be making sure my GP hears about all these alternatives and can actually help me for a change.

Hi there, I’m so sorry to hear how much you’re suffering right now. I know the current pandemic is making things much harder to receive care but I have to say - it’s very much an excuse. The delays, the lack of knowledge, the lack of sympathy, urgency all of it, in regards to endometriosis care on the NHS has been a huge problem long before covid-19 started. I just really want to encourage you to keep pushing / I know it’s the last thing you have energy for but go on at your GP and your consultants - you’re entitled to better care!

And I saw your note to someone else about pushing for bladder, bowel checks - definitely do this! I am now due a 3rd surgery but my first including a colorectal surgeon because finally they’re taking my bowel seriously. The gynae could see, even from a ultrasound, that my bowels are stuck to the ovaries. I’ve had bowel symptoms for 10 years and she said it’s insane that a colorectal surgeon would never have even been consulted. So my advice is push for that now to try and minimise chances of repeat surgery (which carries its own risk on top of everything that endo is already doing to our insides).

Sending positive energy and strength your way!

Thank you for your support and information. I will be sure to say all this to my GP on Thursday as the pain and tiredness is really scaring me. I hope you are ok. Is it hard to get a colorectal and gynae surgeon to do a surgery together or something? Or is it because it costs too much for the NHS? X

The tiredness in itself is debilitating - nothing seems to help so I really feel for you.

Well I think it’s a cost and disorganisation thing - the only reason it’s even been a possibility for me now is because I’m lucky enough to have private health insurance through work for the first time - despite my horrible symptoms before they would just never refer me. But also, I could never get to a BSGE consultant - I finally got referred 5-6 years ago and then be seen by someone else because the consultant was “busy” or “not in this day” 🙄 there’s always an excuse.

What id advise is 1 make sure you see a BSGE approved endo specialist gynaecologist - there is an online directory and you can find specialists closest to you so gp can refer you to them specifically. I really wouldn’t advise having a laparoscopy by a general gynae because all they will do is keyhole surgery to confirm you have it and from some stories ive heard they’re not qualified to confirm/deny you have it anyway. And should you have it they won’t treat it (not properly) because theyre not qualified to.

If you see a BSGE specialist - step 2 is - make sure you go on and ON AND ON about the bowel symptoms - there is no such thing as too much. Because as a BSGE accredited gynae they should (if they’re good) already be closely connected to colorectal specialists within the hospital. It is so common that endo affects the bowel that if they regularly treat it they’d have to get a colorectal specialist involved on regular occasion. And at this stage you push for the consultation with the bowel specialist and the two can get themselves aligned. Also just a note my current gynaecologist could diagnose endo from a transvaginal ultrasound and even found a endo nodule on my bowel via the scan - I’ve had about 20 ultrasounds in my life, they’ve never been able to read anything but massive cysts.

You’ll hear so many excuses, from the gps, to the hospitals and maybe even the consultants but try not to give up (I’m saying this and I have given up several times hence needing a 3rd surgery so I know how hard and tiring it is) but just know it is possible, it is done, and anyone who tells you different is lying. This is their job and they should give you the best care first time around - the craziest thing is not doing it properly/thoroughly the first time around costs them more in the long run with repeat surgeries! I hope you get the care you deserve x

This has been a huge help to me. Thank you so so much. I am so sorry to hear you had to go through so much before you were finally listened too. I will be sure to tell my GP I want these referrals to the specialists as I feel I was panned off the first lap. As all I was really told afterwards is yes you have some endo on your pelvis and that was that really. But now I know it is because they must have had no clue. I hope my GP takes me seriously this time. Xx

I’m so sorry you’re feeling like this. I’ve been feeling exactly the same way about things, I really don’t know how much longer I can carry on with this awful quality of life. It feels like none of the doctors work well together, it’s a continuous battle on top of everything else we have to deal with.

I’m hear if you ever want to message me.

Best wishes xxx

I am so sorry to hear about your hard times. I really wish I could take everyone's pain away. Here when u need a pick me up too. Its reassuring to know we're not alone but we shouldn't have to be suffering this much. Xx

RE work: if your endo affects you regularly and severely, it will be classed as a disability and you should be covered by the Equality Act 2010 and work should make as such reasonable adjustments to support you not monitor your absences

Does work know you suffer from endometriosis? Have you had an OH assessment? Are they making adjustments for you? are you in a union you can contact about it?

Hi thanks for this, it is really reassuring to know I have something to protect me in work. My absences are being monitored and a OT maybe given to me to support me but it is such an unpredictable illness it is hard to explain to people who don't understand. My work do know but I don't think they really understand. Xx

here is a link further down the page for endo in the workplace. I hope you find this useful:

endometriosis-uk.org/public...

You have all been an inspiration to me to fight and find alternatives and to keep me from self destruction thank you all. You truly are all warriors xxx

hi please keep pushing and get the care you need. I have been to hell and back with this awful illness I have had it since I was 17 I am now 47. I have had 15 operations due to endo and I have it all over and have had every specialist there is! To date I have 3 parts of bowel removed and countless cysts and ruptures I had to have total hysterectomy 4 years ago everything gone my ovary's and tubes also my cervix and part of my bowel and also a kidney. So as you can probably tell I have a bit of experience with all this! It has robbed me of so much of my life we can never have children the job I loved so much it has taken! but thankfully not my husband who has been great and by my side for all of it we have been together for 30 years and he knows so much about endo he tells the dr,s. i have had my fair share of bad gynecologists but have a great one now and urologist and colorectal specialists. As it stands now I have been waiting since November for a big opp they are going to take my bladder away also what's left of my bowel and try to untangle endo from my remaining kidney because I only have the one left. hopefully wont be long now. I type this now as I recover from my 16th opp my appendix burst and flooded my system with poison I'm lucky to be here! I have been 3 weeks in hospital on IV antibiotics. I have spent half my life in hospital just came home yesterday. sorry for long post if you have made it to the end! then I really wish you well and hope you get the help you need. Push and push because I left it to long and look at me now!

Hello, I am so sorry you have had the worst time. I feel horrible even moaning after all you have been through. Have any if the symptoms I've mentioned link with yours ? And never be sorry, you must share your story, you are an inspiration. I must admit I was crying when I read your post as it is so scary and I just wish you a happy healthy life. I really hope I get taken seriously as I am really scared. X

sorry for the late reply I have just got home from hospital. had a abscess removed from bladder wall and then got sepsis! I'm not having much luck but glad to be home. Yes a lot of things you mentioned link with yours which is why I want you to keep pushing you know your body please get the treatment you deserve. and good luck.

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