Just had my first gynae appointment at long fucking last and I’ve come out of it randomly sobbing and pissed off.
The consultant wouldn’t listen to me as I tried to explain how I feel etc. I had written a list but he didn’t want to see it or have me read from it. He has referred me for an MRI so that is something but he refused to acknowledge that I am in severe pain - and have been for 5 bloody weeks. I asked about alternatives to co-codamol since it isn’t strong enough and he said that it is fine and I don’t need anything else. To make matters even fucking sweeter, he has told me that he will see me in 4 MONTHS time after wanting me to try my pill for 2 months straight twice.
I literally give up with all this. I’m permanently exhausted, don’t sleep, know nothing but pain, piss off my manager for needing time off work when I feel I can’t move and my depression is getting worse with each day that passes...
I just give up.
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I’ve got suspected endo. I have all the symptoms that last all the time and are heightened during my period. To be honest, I think I am going to call up and try to switch drs tomorrow. I cannot deal with him x
I know it hard mines gone on over 20years to even get a lap.
I was better on the pill so they kinda gave up and went “ oh well shes better” !
I just couldnt b bothered to keep complaining thats all...
About 3 years ago it got majorly bad and was sent for lap nothing was found luckily i got a brilliant GP who has endo herself and she sent me private through nhs to a actual lady endo specialist and she done another lap again NOTHING but she did find my blood clotted to quick which meant when i was on period it was clotty and it was basically giving me labour pains so she put me on trans acid which has worked a treat but she also sent me to a gastro as she suspected a food intolerance!
Which is very common...ibs and endo can have ex same symptoms and ibs always flares period times.
So saw a gastro and i am gluten intolerant which inflames all gut and colon so stopped all gluten foods and it got better and better but still was in pain so on returning to gastro i said something still not right so she sent me straight in for mri, four days later she called to say “ u have degenerative hip desease and two herniated vertebrae”!!! Thats ur pain.... they reckon was a old injury as i was a gymnast and also very sporty all my life.
ANY WAY WHAT IM GETTING AT IS.... a mri is good, anything they do is gona help but it may take time... the pill helped me for 15 years it was alot more bearable but as a women were so quick to go OH IT ENDO( im guilty of that) but sometime it isnt, there can b other reason why ur periods are bad but not endo.... just bear with it and it will get diagnosed it just may take time.
Im sorry to hear about the rough time you’re having, this is the process for each & every one of us unfortunately.
You will, at times feel like you’re talking to a brick wall when explaining your symptoms to Doctors/Consultants etc. The key is not to give up!
Once referred to a Gynae consultant, any further investigations can take months, even up to a year. Then if pain still persists you’ll be waiting months for a Laparoscopy to confirm diagnosis, even then Endo can be missed, which leaves further waits for an Endometriosis specialist.
The average time scale for women to be diagnosed with Endometriosis is 10 years! Its outrageous and wrong - we are all in the same boat.
The only other option is to seek a private consultation with an Endometriosis specialist, which would speed up the waiting.
I would suggest you contact the PALS department at the hospital to give some feedback on how you have been left feeling. They are generally very good at looking into things...
I second this - I had a (much more minor) issue and couldn’t reach my consultant and contacted PALS and received a response from a nurse the next day. Your situation is exactly what PALS is for - you should be able to find the department’s contact details on the hospital’s website.
It was through contacting PALS that I actually got my appointment so soon. It was meant to be an urgent referral but nothing was happening so they made it happen. I might call them and see what they can do
Sorry to hear you’ve had a shit time. How long were you in there for? Did he do a physical examination? You can email the consultants secretary and explain that you feel you were not listened to and the pain you feel was dismissed. See where that gets you x
They were running an hour and a half late. I was in the room for maybe 15 mins max. He felt my stomach for about 30 seconds and the rest of the time was talking - but only what he wanted to talk about. It is so frustrating!
Reason I asked it because every time I go he does an internal examination. He should have done that at least as they can determine if something is wrong if it’s painful. They can check the ligaments and all sorts by doing that. An internal examination for a lady who hasn’t got endo won’t feel pain. But most ladies with endo will always feel pain from it and pain afterwards like I always do.
I’m reading a book that someone posted on here a while back ‘The doctor will you see you now’
It’s a really good read and he mentions this in the book x
I was definitey expected an internal examination but there was nothing of the sort! I’ve managed to get the number of the secretary for the consultant and I’m going to try and get sent to a different consultant who might actually listen to me
Take yourself to a+e if the pain is bad and not managed by what they have gave you and tell them your not going until the pain is under control. I had appointment after appointment where i came out feeling like absolute shit. I had an occy health appointment with my work and it was him who told me 'who shouts loudest, gets heard' and it worked. Went to a+e later that day, after telling them that iv had appointments they referred me to the gyne on call in a+e because the pain wasn't managed i was admitted. Moved everything on ALOT quicker, and had a different consultant at the end of it. I know some people won't agree with doing it that way but sometimes you just need to think fuck it if its that bad.
I may just do that and hope it works for me. Although, the last time I went to A&E they wouldn’t see me there and sent me to a mini doctors surgery on site which was so unhelpful.
Sorry your going through this! I k ow how you feel cause I’ve gone through it too m. Basically I was seen under general gynae for like two years and it was such a waste of time. They didn’t take my symptoms seriously and just kept prescribing the pill. After I was discharged my manager told me about specialist Endo clinics and so I managed to get a GP to refer me to one of my choice. The first consultation was surprisingly disappointing; the Dr hasn’t read my notes and said “we”ll send you for an MRI to rule out everything”! Basically she was saying that the MRI would show up the Endo which I know isn’t the case. Anyway, I asked to see a different Dr for the following appointment and she was much better. Don’t be surprised that you have to fight your corner with this condition, many people do unfortunately
If you can get a referral to pain management that could help. It helped me a lot. The nurses are really good and they know all about the condition and the different treatments. Look into TENS machines if you haven’t already.
My daughter is now 21, she has been suffering since the age of 15. At 18 the pain was so bad she was admitted to hospital, the doctors thought possible appendicitis, they were removed but that was not the problem. Since then the pain and bleeding has got so bad. About 8 months ago she had a gynae appointment the consultant advised her to stay on the pill for 6 months. 3 weeks ago she had her follow up appointment, I went with her as in the past she has not been listened too. It should not take me to accompany my 21 daughter. At first he didn't seem to be listening, then I asked why has she not had an internal ultra sound, MRI and even a lap? cut a long story short, we held our ground pushed and she has had the internal ultra, which immediately showed something, the MRI and is going to have the lap tomorrow.
You know your body so if just keep pushing. Its taken us 6 years back a forth but we did not give up.
He’s put me down to have an MRI so that is something. But when I said I wanted a lap, he made loads of excuses about why he didn’t want to do that and blah blah blah. It’s honestly driven me so low now. I feel like all I’ve done is be pushed back and back by people who think they know my body best
The first appt when my daughter went herself, he tried to also put her off.
She has also experienced, tiredness, numbness in legs for months and advised the consultant, nothing was ever done and basically didn't take her serious. But all since I went with her and demanded scan, mri and lap, they carried out a blood test, which I would have thought it should have been carried out months ago, to find she us b12 deficient. On a course of 3 infections per week for 2 weeks, then will see if needed for rest of life. It's hard I have seen my daughter so low but please try a keep positive and just keep pushing. Xx
There’s nothing more frustrating than having the people who are supposed to help you, be dismissive of you. Especially when you had hope and now it’s gone. So I really feel for you.
But don’t give up: become like a dog with a bone! I agree with the other advice you’ve had here: ask for a new doctor, contact PALS and, if you feel it warrants it, make a formal complaint.
I know that it won’t make the pain any better but you will feel more in control. You should never have a healthcare professional make you feel like that. Unfortunately, it seems that many women experience something similar.
Thank you. I plan on emailing PALS today as I don’t have much luck with the phone and actually speaking to people. I’m not sure whether they can help with the new doctor thing or if I’ll have to call gynae directly
PALS helped me get my appointment before but can’t apparently do much right now. They’re sending me a complaints form and I’ve spoken to the secretary who is going to try and see if she can refer me to another consultant
Sorry to hear you aren’t being listen too but seriously do not give up! I made that mistake my gyne discharged me and said nothjng they can do and refused to put me in the lap list, 3 years later I am suffering even more and it took months of fighting with different gps to get reffered back to the hospital but lickiky this time I am being seen by the lead consultant who is taking me more seriously. I had 1 appointment with a doctor below her who told me having 5/6 cysts on each overy is normal and to lose weight to solve my issues!! Im chubby fine but I am by no means huge so as the consultant had promised me I would be put on the surgery list I sat there and refused to leave until he carried out that promise (I really don’t want surgery but at this point I have been on the pill back to back for years, tried changing my diet, I did lose weight, I have tried loads of different painkillers, had internal scans) so he gave in and put me on the list to finally try and get me somewhere and I am now due my lap in just over a week
Did you see the lead consultant? As I think they usually know a bit more about it and are more helpful so maybe try and push to see them instead? I did also find saying to them it was actually really damaging my mental health and all my relationships (partner, family, friends, work) made them take me more seriously, not sure if you have told them that?
Just keep pushing and fighting, I know it is exhausting but none of us deserve to be in this pain and exhaustion etc all the time
I really hope someone takes you seriously and you get some proper treatment and answers xx
I definitely tried to talk about the effect it is having on me but he refused to listen to it, wanting to focus on other things. I asked my friend who has been to that gynae before and she said the dr I had is awful and to try and see someone else who seems to be a specialist in endo so I’m going to see if I can get an appointment with him.
I get that, I had doctors brush off how it was affecting me as well and I know it just makes you feel even worse so I’m sorry that happened to you. Hopefully this other specialist will be a lot better, otherwise I’m not sure if you could look into a bsge centre? They are meant to be really good as well, but my gp refused to refer me there.
My consultant is exactly the same and doesn't want to know. They have a plan and don't seem to deviate from it and don't listen. Pain is pain and you need better pain management. My GP presribed me neproxam initially and then also nefopam. I take regular paracetemol. My GPs have been great re pain relief endo specialist didn't add or change anything pain relief wise.
I had awful treatment after my lap and PALS were really helpful I had to complain about the registrar as she was so rude and unhelpful.
We all deserve better and they are accountable for how they interact with women.
I have found the endo specialist nurse really listens and has taken on board my feedback re the consultant. I hope that you get answers soon.
Thank you for your reply. I’m hoping that i can see a different consultant or I’m just going to contact PALS again (as they helped me actually get my appointment) and see if it gets me anywhere. It didn’t help that he was running an hour and a half late either xx
To be honest, you sound really lucky to me. You have seen a gynaecologist and are getting an MRI within 4 months. Wow that's huge.
I have been suffering with endo for 14 years. My previous gynaecologist botched the lap and caused a hernia and possible damage to my bladder.
After a two year wait, I finally got to see an endo specialist and after another year with him, he has finally recommended an MRI.
Almost all the doctors I have seen have been arrogant, aburpt and dismissive. It sounds like yours is the same but at least he is getting things done. Please thing carefully about changing doctors.
I know I’m lucky, but it was also because I pushed very hard. More than anything, the manner of the consultant yesterday was appalling and has left me feeling more awful than when I went in because he wouldn’t listen.
Hi girl. I'm not a doctor neither any other professional body. I've travelled to Poland for my gyno appointments, otherwise I would've been dying with pain on my bed. Anyways. I take Cyclo3 Fort tablets that keeps my pain away. I've been waiting to see gynecologist in UK since September last year. What a joke! The tablets I take are French production and are available to buy without prescription. Believe me or not they are herbs based. I also take pure vitamin D 1000 twice a day(this keeps me off the mood swing) I was misdiagnosed in UK with Endo and diagnosed back in Poland with Pelvic Congestion Syndrome.
Once you have the MRI and there is photographic evidence of the endometriosis patches everything will run a lot smoother. Take it a step at a time. Like people have been saying changing contraception and a+e admissions should get you the pain relief you require and then after that it's just a waiting game. But like I said the more tests and evidence that is collected the easier and smoother things will become
I am sorry to hear you have also had to go through this. The best advice I can give is you need to stay mentally strong in yourself for yourself. Don’t let this stop you living or let it get you down because it will never not be a shadow in your life if it is endo. It never ends, never goes away it’s chronic for life. And if you spend to much time worrying about this diagnosis or that doctors opinion it will drag you down.
Take every opportunity to learn more about it and look for every opportunity to help manage the pain.
Having had all scans under the sun, all contraceptives, pills, medication, painkillers and two laps I still suffer with endo (I’m only 24 with severe endo) and some days I’d rather my life would just end than carry on with it, but with my next consultant meeting tomorrow to discuss the next lap for my port site endo and how to proceed I have to pick myself and dust myself of and try get what I can from it.
I know it’s probably not what you want to hear but I do hope it helps you put yourself first. Keep pushing, keep fighting and find your inner strength...you have it!
Hello, i definitely second getting another Drs opinion, my Consultant missed a fibroid and it wasn't until i saw a radiologist a few months later that my Consultant took it seriously, just awful. In my experience it really does depend on who you see, so sorry you've gone through this too xxx
Don't give up lovely, personally I'd ask for a second opinion, get a copy of your notes from NHS it's free and easy to do, then you have a your health records and can take the important bits to your next appointment. Don't let them fob you off. I know it's frustrating but keep pushing. Much love xxx
You CANNOT ago to any gynaecologist. You need to seek a professional, a specialised and experienced endo surgeon and ONLY get prescriptions for drugs, tests and surgery with him or her. Please, if you need help finding a professional, reach out to the UK association for endometriosis.
I experienced similar in that I was with a general gyne at a BSGE centre, and he was clueless about endo. I simply phoned his secretary and told her I wanted to be changed to ‘mr specialist in endometriosis’ as I was not told I have a choice in who cares for me. It wasn’t a problem, but it did mean I had a longer wait-which was well worth it. Good luck 😉
I’ve got an appointment with a different consultant come through today. Although, it isn’t with the specialist. Apparently, his waiting list is over 8 months 😱
Sorry yeah, I saw that as I read down. The thing is, if your endo is remotely complicated, the general gyne will diagnose it, perhaps remove a little and refer you to the top guy who will have to do another lap. The first time I saw my specialist he said I’d done the right thing for that reason. But it’s a long time in pain with just co-codamol for you. I explained to my dr that the side effects from codeine are not compatible with my job, I can’t be drowsy, and it also makes me constipated which causes a ridiculous amount of pain (later found my ovary and bowel were fused so that’s probably why!) so she started me with pregabalin, an altogether different type of painkiller which works on the nerves. It’s pretty good day to day but still found myself taking codeine on top at bad times, then switched to tramadol for those times-it doesn’t make me constipated or drowsy as long as I take the one, not two!! Then there is the trusty heat pack and hot baths I literally cannot live without!!! It’s a life changing problem that’s not taken anywhere seriously enough. Totally agree with comments above re mental health. Good Luck with it. X
1. If your pain meds are not cutting it, talk to your gp. It is my gp that prescribed mine (not gynaecologist) and has worked with me to get to a place where they help (even if they don't quite conquer it on the worst of days). Long story short, being in so much pain makes everything else worse because it burns through your energy, tolerance, ability to function.
2. If you are not being listened to then speak up (if you can, since not everyone feels they can). Complain via the hospital complaints system. Talk to your GP. If you feel that defeated by your gynaecologist not listening you can ask to be referred for a second opinion. I did not get anywhere (other than shut down and fobbed off) by my local gynaecology department even after seeing different Dr's under the consultant I was assigned to. I asked to be referred elsewhere, and was lucky enough to choose a hospital that has endo specialists (check online and you should be able to see if there is one near you). Be warned that it has been a very slow process with them as they are backed up and my first appointment took longer than normal. It was worth it for me though as I felt heard and listened to (despite a fast paced appointment).
3. If you are not sleeping is it the stress, the pain, a combination, or just plain can not sleep. Is it getting to sleep or staying asleep?
A) Meditation is an easy quick thing to try at home for free. There are tonnes of free guided ones on you tube, Spotify, phone apps. Some will sound irritating but if you can find a voice you like, I was surprised how much tension I am often holding in other parts of my body in reaction to the areas that hurt. It also helped redirect my thoughts when over thinking contributed to my sleeping difficulties.
B) Your doctor may be able to prescribe you something in the short term to help you drop off
4. Do not let your mental health get pushed into the background. If you need someone to talk to and/or medication prescribed (or adjusted) please Please PLEASE talk to your GP. They can refer you for anything they can not directly sort for you. You matter. You count. Your feelings are real and validated and are not unreasonable or wrong. You are struggling, which is entirely to be suspected given your circumstances. But please Please PLEASE do not give up because you deserve to feel better. If you can not wait for an appointment do not hesitate to contact the mental health crisis team in your area.
5. If you are finding yourself unable to perform at work due to your symptoms, is asking for your GP to sign you off work short term an option? It will mean your employer has to legally allow the time off and you will not have to deal with repeatedly calling in or your manager/boss giving you a hard time each time.
In the meantime, while putting any other wheels in motion, consider following through with the MRI and birth control instructions as even if you end of seeing a different Gynaecology team they are things that have then already been explored and won't take up extra time with a new gynaecologist.
Above all, listen to yourself and do not let anyone make you doubt yourself. Only you know 100% how you feel and you deserve to be heard and helped.
I hope there is something in there that helps. Sending warm thoughts, positive vibes, and a hug for when you need it most.
I have spoken to my gp via a phone appointment because I cannot get there around work but have been told to stick with what I already have.
I spokewith PALS and they are sending me a complaints form to fill out and after talking with that consultant’s secretary I should be referred to another to get a second opinion. They have an amazing endo specialist but his waiting list is 8 months so will see how this next consultant goes.
Getting to sleep is no issue whatsoever since I am so exhausted. I wake up from pain and feeling horribly lightheaded - so all in all, not much fun. I have tried meditation but haven’t had a great deal of luck so still trying out alternative videos.
Being signed off work isn’t possible at the moment since a lot of people are off and I am having to pick up the slack.
I definitely will continue with the MRI (I had the bloods done for it this morning) and will try out taking my pill for 2 months without a break. Hopefully whoever I may see next will listen to me.
I am glad you at least have a plan and an appointment with another specialist in the works. I am concerned that your gp told you to just stick with what you have if your pain isn't being at least considerably reduced and also that they didn't offer anything from a mental health perspective since you are struggling. You can self refer to MIND and dont hesitate to call the crisis mental health team in your area if you need it. Better to be safe than sorry.
As for work, keep in mind that a job (no matter how much we love it) should never go before yourself. Work to live, not live to work. I paid, with my health, for forgetting that - I truly hope you never do.
In addition to my meds, I am never far from my collection of microwave heat bags. I found a great range via ebay where they are divided into sections so the insides don't all pool to one section when arranging it around me. I even found one in the range that came with a removable. Strap to be able to strap it to an area. If you are not able to use one at work, due to impractibility, there are stick on heat pads that can be stuck to the inside of your clothing near where it hurts most. Not as good as microwave bags but they help in a pinch. I recommend watching for sales to stack up on them at a fraction of the normal price if you find them helpful. The kool n' sooth migraine patches are a life saver for me with migraines and other bad headaches too (I stock up when I find them on good sales - the cheaper versions lose their 'stick' too quickly). They stick to your forehead or back of your neck (or both!) and are cold and have a mint like scent. They help with the nausea and spins as well. You may find they help with some of your symptoms.
Fingers crossed you find some answers and relief soon. xx
Hi! I got a letter through this afternoon with a new appointment in three weeks with a different consultant which is good. I’m going to try and talk to a different doctor about something stronger to help me out.
I actually stock up on the stick on heat pads! My issue is that they can feel too hot on my stomach and the last time I wore one at work, I scratched my stomach and when i went to the loo, I saw that I had caused what looked like grazes because my skin is apparently sensitive 🙄😂
I do need to start remembering that work isn’t as important. But, I always feel so guilty needing the time off. I’ve had the day off today after having bloods done and I’m glad I did because I feel so rough after fainting. Xx
Yah! On the appointment coming through, that is great news.
Medication wise, it may be a matter of combining types of pain killers. I am not sure how your pain affects you but for pain relief I take a prescription strength anti-inflammatory and a strong pain killer along side it. One or the other doesn't do it for me, but combined they make my pain levels tolerable, most of the time.
I have skin sensitivities too. They are such a pain in the @ss! If the heat pads are something that could help regularly it might be worth making (or having made) a little pocket to stick them in, that you can attach inside your clothing or wear under it (depending on where it makes the most difference for you)? A nice soft cotton or brushed cotton. 1. If you wear a belt or have belt loops a discrete loop to hang from either, into the inside of your waist band. 2. A cheap tiny hook or snap fixture you can easily add inside your regularly worn clothes with a couple stitches. 3. Velcro could be added, as a flatter option, but it can pick up debris like lint in the washer and dryer. 4. Alternatively, a soft, cloth, belt worn under your clothing with a pouch attached to it.
Easier said than done, but you should never feel guilty for looking after yourself!
I got diagnosed with Endometriosis a year ago tomorrow, and feel everything you feel. Sometime the doctors don’t want to listen, but you really have to push them. Even one of the nurses at the hospital said that to me. With regards to your pain, the only thing that helps me is Neurofen Plus. They are the ones with codeine. You can only take them for three days at a time, so I save them for when I come on my period, but they work so well, especially with a hot water bottle! When I have a flare up it can cripple me to the point I can’t move and no pain killers will even touch it, not even the Neurofen Plus, so there are times when the pain can be unbearable. I hope you get everything sorted soon!
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quite understand that (may i say it) i think of punching some of them in the face lol! xx
Giant rant - emotional word vomit. 
Just back from gynaecologist I give up 😢
Ready to give up!!
