I'm new here so hoping this helps! So I've always had terrible periods and in the last two years or so it's really been getting worse. My periods are so irregular, as are my bowel movements, I've been passing blood in my stools, and have rectal and pelvic pain on top of my usual pain. I went to see my GP in February after I passed out from the pain and finally someone took me seriously. She said she suspected endometriosis referred me to a gynaecologist.
Since then I've been back and forth to my GP with near constant pain. Mefanamic acid and cocodamol are doing nothing to help me, and it's really getting me down. I feel like I can't cope with this any longer.
I ended up in A&E last night because the pain was so bad and it was actually my usual GP that I saw in out-of-hours. I was just given an injection of diclofenac (that also did nothing), and told to go home. I burst into tears and was sobbing to my Doctor that I would rather jump in front of a bus than have to deal with this for one more day. She just said 'let's hope it doesn't come to that' and gave me a script for tramadol.
I've been on anti-depressants before and I really feel myself slipping back to into the dark, so I asked her about starting them again and she said she wouldn't give them to me, because once my pain is controlled I won't need them.
My partner is so supportive, but I just feel so low and so alone and like no one wants to help me. I can't afford to miss work or school and I've been waiting now for over 12 weeks and I just can't take it anymore. I'm only 20, I should be enjoying my life and I'm just not.
Any advice would be wonderful x
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Abbs7664
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I have suffered with endo from 16 (I’m 49 now) I’ve tried everything surgery/ pills/pain killers etc. Nothing worked. Apart from taking the combined pill (Yasmin) continuously with no breaks. It took around 4 months to start feeling the benefit but eventually I was totally pain free. Ive been doing that for 8 years now with no problems. I know it doesn’t work for everyone but might be something to try with your doctors supervision.
That's amazing to be pain free! Unfortunately I can't take any extra oestrogen because I suffer from migraines so I'm using the nexplanon implant just now. I glad you've found something that helps!
Hey! I’m so sorry you’re going through all this. I can feel your pain. I’ve had issues with my periods since I was 13 - I’m 19 now. It was only in September that my doctor allowed me to go on the pill. In December 2018, I went back to the doctors and brought up endo. Have done that before but was laughed out the surgery. I mentioned it because my best friend was diagnosed at 12 with it. Eventually, I got a referral to gynae.
What the worst thing is, the waiting times to be seen are terrible. I ended up nagging for timeframes etc, and they ended up giving me a cancellation appointment after I’d told them an expedite letter had been sent the month before (which they lost!)
I’m now on the list for a diagnostic lap as it is believed I have Endo. Still waiting for MRI results 6 weeks on and have no date in sight for my lap.
Keep pushing for something to be done, otherwise you’ll fall off the radar and you’ll be stuck going with the flow. Where do you live if you don’t mind me asking? All areas have different wait times but many run over that due to lack of funding
That sucks that you're having to wait so long. I'm in Aberdeen, so I don't know how long the list is really, but I did see on here that someone had to wait like 30 weeks! It sounds like I'll have to give them a phone on Monday. Do you have to ask to be on the cancellation list?x
I spoke to my consultant’s secretary and she put it in my notes that I would take things sort notice (cancellation list)
I’ve been told that I could be up to 30+ weeks before having my lap. I’m sitting at about 19/20 weeks at the moment so by the NHS limit which they set themselves, I should have been treated by now.
Oh well. I’m halfway through having been signed off work for 4 weeks because my body isn’t coping and I dread going back. When I’ve been off in the past, I’ve been subjected to awful comments from the big boss because I “should be better when I come back after being off sick” I just don’t know any more 🤷🏻♀️
I’m so sorry to hear you are feeling like this . Take a breath and know that there are thousands of us on here feeling and sharing your exact same pain YOU ARE NOT ALONE!!!!!!
As tedious as it is you must keep going back to doctors / hospital / out of hours and making yourself heard. I know it’s a pain I’m already close to disciplinary action of my absences at work ( yeah I know ) due to continually being off for appts and with pain etc. I know this sounds trivial but I’ve been on codeine , tramadol etc etc but found they do nothing but make me feel sick/zoned out. I do feel continuous paras/ibuprofen taken continually ( every 4 hours ) do suppress it I had to say it because I know there such minor drugs but they actually help me more than the stronger stuff .
Have you also looked into altering your diet ? This helped me a lot ? Eliminating high inflammatory foods like wheat and gassy foods ( beans , onions etc ) . When your having a good day I would recommend exercising; high intensity cardo , yoga , mediating , walking anything.
I also nearly always go to bed with a hot water bottle and keep tonnes of different meds next to my bed ? Even anti-acid tablets ( peppermint ) can help?
BUT most importantly look after your mind . You CAN do this . This WONT beat you. You need to breathe and relax as much as possible . Surround yourself with people who are supportive and take comfort from them but never ever give in or give up ❤️
Thank you so much, you have no idea how much it means to have someone say that right now.
That's awful to be facing disciplinary! It's not like you can help it. I wish work places would help to build people up rather than take them down.
I do use a hot water bottle (with a fluffy cover of course!) and I was given peppermint capsules. To be honest I haven't been using them, but I'll give them another try.
I've tried a little with the diet, but I was a bit sceptical. I'm good with sticking to it until the pain gets too much and then I just eat crap.
I used to go to yoga all the time but I was getting frustrated with not being able to do it as well anymore. I might try a gentler class, cause I do miss it.
I really can't complain support wise, my partner and my friends are great. It's just that they don't really understand what's happening, so I'm so so glad I found this place!
You cannot go to the GP nor a regular gynaecologist. You need to get referred to a BGSE centre or, even better, a Nancy Nook excision surgeon ASAP. Mefanamic acid, cocodamol, diclofenac are all painkillers. Painkillers cannot help women with severe endo and adenomyosis. In your condition, I fear not even morphine will help. You need a well-performed excision surgery + either visanne or the mirena coil (I would push for the first, which isn't available in the UK but you can get a prescription and order it from other countries). If you need any information on specialised excision endo surgeons and gyae, please reach out to me. I'm here if you need anything.
P.S.: btw, you're 20. Where are your parents? Aren't they supporting you or trying to help you in any of this?
I've just had a look and the hospital I've been referred to is a BGSE centre so that's a bonus! I didn't know about that or the Nancy Nook, so thank you very much. I'll try and push for that as a treatment as well.
I live about 80 miles from my Mum and 30 from my Dad. They're okay but I don't think they really know what's going on, or what to say. I'm actually a medical student, so my friends are really helpful with anything health related, but we don't get taught much about endo unfortunately.
I'm sorry you live so far away. I was hoping they would at least support you financially if you need a break from work for a while anywho, the Nancy Nook Endometriosis Group on FB is a godsend and there's a file in the files section called "Surgeons International" with the best surgeons in the UK (most of them working privately or within the NHS in England). Anyway good luck with the BGSE centre, I hope it's a good one with specialised surgeons with extensive experience and low recurrence rates!
P.S.: Visanne is a progesterone-only birth control, but dienogest is a endometrium-specific progesterone aimed to reduce its growth. If you can't get Visanne try for a birth control pill with dienogest and/or norethisterone acetate (e.g. Primolut-Nor).
Sorry you are going through such a rotten time, especially at such a young age. It stinks, and I think you're dealing with it admirably well.
I had lap surgery 8 weeks ago to remove 1 cyst and drain another. My consultant told me I'd probably be fine after 1-2 days, which I was highly doubtful about, so I told my employer I'd need 1-2 weeks off. What a joke!! It was agony, could barely walk for a month, and my periods since have been extremely painful, and hormones seem to be all over the place which doesn't help emotional state! No-one mentioned this aspect at all before or after surgery. 8 weeks later still off work, and can't even wear pants as it's so uncomfortable! (slight problem when going out in public), and only now just feeling have turned a corner with the pain and can finally start to see light at the end of the tunnel.
I think that was complete misinformation and mismanagement of patient expectations from medical staff. Also felt like I was being gaslighted post-op as private nursing staff and consultant were flummoxed at how to deal with post op pain and made me feel as though I wasn't trying and was overreacting to pain, and insisting it was because of the gas they pump into the abdomen for lap surgery. I said, 'I'm telling you this isn't just distension from gas'. It felt like someone had rummaged through my insides with an ice cream scoop and a hacksaw (weeks later consultant conceded there was probably some nerve bruising), and none of the pain relief given even touched the pain - morphine, diclofenac, codeine etc . Favourite quote from on duty Dr - holding up piece of paper - 'Look, your CT scan [to check no other organs were nicked during surgery] is clear, you can go home now' [=this piece of paper says you're OK so it must be true]. Ladies, I was crying with pain, unable to stand. I looked at him as though he was mad - boy did he get a Paddington 'hard stare'.
Once I crawled out of the hospital ,and started talking to my GP I felt much more supported in terms of pain management. I have to say the NHS has been a zillion times better than private system in terms of aftercare support. So 3 things I would advise to anyone going through this - firstly, make sure you find medical professionals who are empathetic to the pain, also pain management is a speciality - gynaecologist is not pain management specialist - the NHS has a pain management support service which may help so ask for a referral via your GP.
Secondly, talk to friends and other people - asking around I've heard so many people talking about dealing with long term pain, despite what medical professionals have told them. Constant pain, and being drugged up and dopey is no joke - it takes you to a very low and lonely place, but speaking to others I realised I'm not alone, and there's nothing 'wrong' with my recovery pace.
Thirdly be ever so kind to yourself and rest when you need, surround yourself with people who help you emotionally.
You aren't alone in what you are going through or what you are feeling, and it's a very normal, very human reaction to a difficult situation.
💯 percent get a second opinion. For starters have you been referred to a specialist to investigate? And if you have received no joy have you requested a referral to a different one for a second opinion? You are, as standard, allowed this on the NHS. Utilise it so it helps you to get to the bottom of things and helps you receive the best possible treatment you need. Treating the pain is important but so is treating the root cause and any other symptoms like your bleeding because they do have a toll. Specialists in your area can be researched on line and you can ask to be re-referred to your preferred one, keeping in mind wait times may be longer but treatment might be better. It is a hard decision to make so give it careful thought.
For your pain, I take Tramadol and Mefenamic acid for pain and still use heat bags as well - not ideal but whatever helps. It did take me some time to get into a routine of recognising when I needed to take the tramadol (use as needed, and I am aware that the more I take it the more I build up a tolerance to it) and I don't always time it right but I have gotten better with it. Pay close attention to your body. You experience it, and you know best how bad it is and when you need help.
As for your mental health, shame on your doctor for minimising your feelings and mental wellbeing! I would be tempted to report him/her if you feel able, or have someone who can do it for you. Mental health is serious. And as someone who has battled it in the past you are in the best position to recognise when you are sliding down that slope....but it doesn't make it easier to ask for help and having your request minimised is shocking and horrible. Don't wait for it to get worse. Get in to see someone else. If you are getting no help from GPs do not be shy about contacting the mental health crisis team in your area. It may be a scary thought but they will talk to you and they will get involved on your behalf by contacting your doctor or GP surgery if they are not managing to identify issues and address them. Don't wait for it to become so bad you feel you can't ask for help anymore. You deserve to be heard and helped. As for 'not needing it once your pain is managed': As someone with chronic pain and a husband and friends in my circle who have varying chronic pain conditions I know that some antidepressants are prescribed to help people cope with chronic pain as a part of their treatment which is a further reason I am flabbergasted that your doctor did not listen to you and gave your pain as an excuse to refuse prescribing medication to help. Next, if you need it or there is even the slightest chance it may help, seek out someone to talk to on a professional basis. If your GP surgery doesn't have adequate in house services MIND offer free support.
I am so sorry you find yourself in the up hill battle. You are not alone. You matter and you deserve to be heard and receive the best treatment available, for all your symptoms and conditions.
Don't let your symptoms allow you to forget how amazing you are.
I really can't thank you enough! I took your advice and got in to see another Doctor at my practice and she was great. She immediately put me onto amitryptyline to try to treat both the pain and depression, and I do think it's helped a lot. She also got me an urgent scan and upped my referral to urgent and I now have an appointment of the 4th July so I'm so grateful that I went to another doctor. The doctor my appointment is with works at an endometriosis centre and he seems super qualified in excision surgery as well.
On the whole, I feel like while I'm still in pain, I'm in a much better place mentally thanks to combination of having an appointment and the SNRI.
Again thank you for the kind words, it does really mean a lot. I just hope the can find a reason for the pain soon x
It is so wonderful to hear this news! I hope your appt in July goes well too and that they get to the bottom of things and find a care plan that fits you. x
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anywho, the Nancy Nook Endometriosis Group on FB is a godsend and there's a file in the files section called "Surgeons International" with the best surgeons in the UK (most of them working privately or within the NHS in England). Anyway good luck with the BGSE centre, I hope it's a good one with specialised surgeons with extensive experience and low recurrence rates!
feeling super lost, scared and alone right now
Feeling very alone and hurt, endo and friendships
Absolutely exhausted and feeling low
Feeling so lost and Alone! 
