A&E trip

[Vee2508]

I had to make a trip to A&E today because I’ve been bleeding consistently for 27 days with severe abdominal and back pains. I waited for four hours and came out with painkillers that I had to cry to be prescribed. I posted here last week asking for advice on what to do because I believe the Provera has caused the prolonged periods and was told to seek medical help. I’m so frustrated because I was asked all the main questions and the consultant went all the way back to square one and told me he had no idea, all the symptoms correlate with the course of Provera and he tried to say that the bleeding doesn’t have anything to do with Provera which I know it is as there’s no other explanation and I know my body and cycles. I felt as though the first consultant didn’t listen to me and he tried to get me out of there, he tried to insinuate that I don’t know what I’m talking about because the surgery prescribe treatments so it’s odd that they hadn’t and I was left to suffer in pain. The NHS are in shambles, they make you wait ages to be seen just to tell you that they don’t know what they’re dealing with. The second consultant was left scratching his head at my situation and instead asked me to go to yet another hospital to get advice from them. I was in so much agonising pain and distress that I broke down and asked if I could please at least be given better pain medications because I didn’t know how I would be able to live through it any longer. It’s so debilitating, some days I can’t even get out of bed and it’s incredibly depressing. My only hope now is that these painkillers will get me through the next few days until my next consultation with the gynaecologist. Does anyone have any trusted pain management tips?

[Kieraface]

oh vee I am so so sorry to hear this. It’s brutal. Endo and adeno are very cruel and I genuinely feel your pain. Nothing really helps with the pain but I found diclofenic and codeine helped but then you also need a laxative as you end up bunged up. It’s a nightmare. Hot water bottle can help a little but nothing really gets rid of the pain sadly

Hope your consultant gives you some more help next week x

[Vee2508 in reply to Kieraface]

I was prescribed Diclofenac, Co-Codamol and Omeprazole to line the stomach and he also told me to grab a box of Movicol sachets but I decided against the Co-Codamol and Movicol and only got the Diclofenac and Omeprazole because I have tried Co-Codamol before and it doesn’t work for me. I pay for my prescriptions and didn’t want to pay for something that I’ve tried already and know doesn’t work. I’m lactose intolerant so lactulose was off the cards and my options are scarce. Thank you so much for your continued support, I really appreciate it. I’m just praying that the painkillers kick in and I get some answers on Monday. I’ve got a list of questions to ask him from research that I’ve gathered from endometriosis pages on Instagram. He offered laparoscopy so I need to ask him questions on the procedure and whether it’ll be excision or ablation. I read that excision is the better option.

[Kieraface in reply to Vee2508]

I’d ask about an MRI before going straight to the lap. If you have stage 3 or 4 endo they can diagnose on the MRI and when they do excision surgery they then have a map to where they need to go as well, made my surgery easier and quicker for the consultant too - might be worth asking about MRI too x

[Vee2508 in reply to Kieraface]

I’ve already had the MRI, I had an MRI in July which is why he suggested either laparoscopy or Provera. He was leaning more towards the laparoscopy but I didn’t immediately want to go down the invasive route as I’m still young and didn’t want to go through the laparoscopy if the Provera may have worked. He didn’t tell me what stage I have but he said that he did see endometriosis over my ovaries. I think he wants to do the diagnostic laparoscopy because it wasn’t all that clear on the MRI. He’ll have a better judgement once he can analyse it internally.

[Trekkie84 in reply to Vee2508]

Hi, have you reconsidering the exploratory and excision surgery? Especially because you're young that could significantly improve your life. Medication won't remove the adhesions which are causing you pain and distress. Something to consider perhaps

[Vee2508 in reply to Trekkie84]

I had my appointment on Monday and my consultant has now booked me in for a laparoscopy in January so things are seeming better. The Provera made things worse so he recommended the laparoscopy too as my options had been exhausted. I’m hoping that it’ll improve my quality of life because I’ve been in complete and utter agony for weeks now. I’ve been at a 10 on the pain scale which is something that I don’t rate so quickly, it’s just so frustrating being young and in so much pain all the time to the point that I feel isolated from my peer group. I don’t go out much for the fear that I may flare up at any moment.

[Kieraface in reply to Vee2508]

If they’ve confirmed from the MRI that you have endo on your ovaries you really probably should have the surgery - it will preserve your fertility as well as if it gets worse they may have to take your ovaries. I’d really think about the surgery. I’m 5 weeks post op on Friday, I still have pain but it’s nothing compared to what it was before surgery. You have to do what’s right for you but yeah maybe don’t dismiss the surgery completely xx

[Vee2508 in reply to Kieraface]

Hi love, I saw my consultant on Monday and he has booked me in for a laparoscopy in January. A part of me is glad because I knew that I’d exhausted my options and it was the only real thing that made sense at this point. The pain has honestly gotten much worse to the point that I was in tears and on my knees at work so I’m counting down the days, any relief is welcome as I’m exhausted by this debilitating pain. Laparoscopy was the best decision for me as someone who is worried about their quality of life and fertility.

[Kieraface in reply to Vee2508]

If they do excision at the same time you will hopefully notice some relief from the pain. Mine hasn’t gone fully but I definitely feel better. Good luck x

[Sunset-lady]

I'm so sorry Vee. I'm day 21 of bleeding on provera and it's sucks. It's destroying my life as the provera makes me hungry and I can't exercise due to constant flooding. I'm just putting on weight and getting depressed and not able to do anything without wearing a huge pad and tampax etc. I'm on holiday at the moment and it's just so upsetting. Have they offered you the coil? I don't know why they wouldn't and it could really help you. Next, at A&E you need to insist that they send the on call doctor down from gyno. There will be one on call. When he comes you need to try and get him to fast track you an appointment. You may have done this already. What I've learned is that consultants and surgeons are specialists in very narrow areas of expertise. My surgeon admitted to knowing nothing about HRT or endometriosis. This is when we are being failed as we can't see the people who can help us. What about zoladex? It's an injection that will shut your ovaries down temporarily and you can only be on it 12 months - it might give your body a rest. Being anaemic is bloody awful. It would also help you identify the pain pattern from your ovaries. The side effects can be tough (it's effectively chemical menopause) but it's great for many women. I'm not sure what provera is supposed to be doing to help me. My doctor wants me to keep going but it's made everything worse. I would have the coil but it won't sit in my cervix. Sending love x

[BloomingMarvellous]

Totally understand your desperation. However A &E is not equipped to our needs in these situations and you will, as you found, find yourself shunted round the system. Your route to help is to go and camp out at your surgery until they take proper action and put an urgent referral into the endo centre. Otherwise you’ll be forever spinning in space. You maybe progesterone intolerant, have an additional gynaecological problem, adenomyosis all of which are specialist areas not the purview of A & E non specialists. You may have a problem with the relative balance of sex hormones mimicking menopause with the Provera aggravating the bleeding or POI . It really needs exploring and won’t be a quick fix. My experience is I was never taken seriously until taking a witness to these appts, who would hold the medic to account. It changes the conversation. Politely, calmly but “we aren’t leaving until this gets properly dealt with”. Sadly women friends didn’t cut the mustard because of the misogyny in the healthcare system. We can get rightfully hot under the collar about it but it is a factor irrespective of whatever sex deals with you so just accept it’s not a fight for today and focus on your needs ….So, I find best results with a male friend, dad , uncle , friend, boyfriend, brother, bloke off the building site. Coach them beforehand as to what you need ( the stare, the bald statement it needs sorting and frankly is medical neglect, the deep sigh and crossing arms and be firm this needs sorting now.

Pain wise I found Nortriptyline helpful immediately ( GP can help here ) but really doing the work on pelvic core specialist physio and anti inflammatory diet to be the best management strategy in addition to surgery. You can get help - don’t give up . There are no prizes for martyrs in this space and you shouldn’t have to endure this - it’s wrong , wrong, wrong xx

[Cheesecrackers]

Just a solidarity post here. I also went to a&e a few months back with scarily heavy bleeding.. I genuinely feared for my life, but noone believed how much I was bleeding and just kept being told 'it always seems like more than it actually is'. I was sent home after 4 hour wait with tranexamic acid and lifestyle advice. It is absolutely infuriating at the lack of understanding of how much this impacts your life and how unbearable it can be.Im so sorry you're going through this especually at your age and hope you are able to find a, solution soon. My only advice would be to echo others - take someone with you to appts, it definitely shifts the level of attention you get, I also find it helpful to keep track as I can get a bit confused with it all and who said what, I end up questioning myself.

Good luck x

[Vee2508]

Thank you so much, I’m so sorry to hear that you also had a terrible experience I waited for four hours too, the consultant asked if I’ve been on tranexanic acid as it’d help but didn’t actually prescribe it which was odd. My mother had similar issues and she has been on both mefenamic acid and tranexamic acid for the pain and bleeding and I’m on mefenamic acid myself for the pain so I have knowledge, working in a pharmacy also helps immensely as they can’t shrug me off due to my extensive knowledge of medications. I know exactly how you feel, they gaslight you into thinking that you’re overreacting despite you knowing how much blood you’ve lost which isn’t the purpose of the NHS, their priority should always be the patients and providing adequate care. I would take someone with me but my mother is currently out of the country and the only other people that I have around are my brother and father who are busy. I must admit, my gynaecologist is very respectful and understanding so I haven’t had any issues with him thus far, he has offered me support and has discussed my options thoroughly. I’m hoping that it all goes well on Monday when I intend on mentioning the option of laparoscopy which was given to me in my last consultation with him.

[Cheesecrackers in reply to Vee2508]

So great that your gynae has been supportive. Hope the appt goes well x

[Cocoacupid]

hun I am so sorry 😢 last week I went to my gp again as my pain had got so dibiltating could hardly walk and was hobbling along plus I was working I was in tears and couldn’t sleep at all. I was prescribed a neuropathic medication as it helps the inflammation in the nerves. I have found now the pain is a bit more manageable don’t get me wrong the pain hasn’t gone completely but it’s a bit less painful so I can work. With out that medicine probably would have had to give up my job as I wanted to end my life as the pain had got so severe. Have been told though the only thing that can really help the pain is surgery. Am being talked about in an mdt next week so hopefully 🤞 I will have a timeline for my next op as I said the pain and symptoms had gotten a lot worse since I last saw my gynecologist consultant back in June. Sometimes you have to keep pushing if you don’t you could be getting worse and worse and just existing. Xxx hope this helps a bit. Just keep going doctors or phoning your counsultants secuatary until you get through to them you can’t wait along time for medication or surgery. Do it till they get fed up and then they have to act. I have so hopefully will get my answers soon. I know it’s a bull ache but that is normally the only option . You need to explain your specific symptoms so they can look further tell them that you have been to a and e . Get your mum or someone who can also fight for you that way they are more likely to listen. I’m 37 nearly 38 sometimes I need a friend or mum to tell the doctors so I’m listened too. As quite often like you said they leave you waiting and waiting to then not even help and that is not fair. I wonder so many women have mental health struggles aswell as physical health because we aren’t listened too. Xxx

[Vee2508]

I’m so sorry that your pain was so terrible that you were suicidal that’s how I’ve been feeling too which is why I decided that it was time to go to A&E rather than waiting for my appointment to come along. I have mine on Monday and I’ve decided that I’ll go through with the laparoscopy since that seems to be my only other option. I’m 24 so I don’t want to keep putting it off and somehow end up making it worse, I know it can cause infertility if left untreated which is something that terrifies me. I was prescribed painkillers that actually did help quite a bit but they’ve worn off now and I’ve been rocking back and forth in pain. I’ll have to take another one after eating my dinner as it’s one that you take with or after food. This is literally no way to live a life, I’ve been becoming increasingly more depressed too. I’ve distanced myself from my friends because I don’t want to be seen as that person that’s always complaining about their pain. I really hope that they can push you for your op sooner rather than later because you really don’t deserve to be suffering, you deserve some much needed relief from all the agony. Unfortunately my mother isn’t in the country atm and I don’t really have any other female figure in my life. My cousin is going through chemotherapy after being diagnosed with breast cancer last month so I’m alone until my mother gets back from her vacation next Thursday. I do find that having her around helps because she too has gone through the same symptoms and pain so she understands and can offer that support, I told her that I was in A&E yesterday and she has been constantly checking up to see how I’m doing now. Mother’s are truly the most precious of all, they’re there to support you through everything.

[Cocoacupid in reply to Vee2508]

Hun sorry your mum away at the mo. Hun I think they left it too long for me and am stage four with a frozen pelvis so I think my fertility has gone out the window. This is why you need someone to fight with you. I had suffered ever since I started periods at ten but in my 20 s definitely 💯 period pain worse I had scans did see a gynecologist as they found a 5 cm cyst on ovary and he said I was fine which obviously 🙄 I wasn’t . I’m glad I had answers early in the year. But honestly hun all I would get told when I went out of hours every month to have a coil. I have a coil but I started bleeding heavily this year in Jan . So had my lap in April of this year which showed the endo. I really hope they help you hun and don’t leave you like they left me at around 24 years old. Xxxx sending lots of love and hugs

[Vee2508 in reply to Cocoacupid]

That makes me so mad on your behalf, I’m so sorry that they didn’t take you seriously and now it’s too late. I heard that there’s a link between people who start their periods early and endometriosis. I started at 11 years old and it’s gotten significantly worse within the past couple of years. I’ve always had them quite bad and painful but they’ve been debilitating to the point of having to take days off work these past couple of years. I was told that they found growth on my left ovary after my ultrasound and MRI so I guess we’ll see where we go from here.

[white61]

I went to A&E and explained I’m in a lot of pain etc. and they sent me home with nothing and didn’t know what to do. I was asking for an earlier scan as I know I have a cyst in my ovary but they didn’t want to do it. It is so depressing. Sending lots of love x

[Vee2508 in reply to white61]

That’s terrible! I’m so sorry that they neglected you that way. That’s so frustrating to me, people only go to the hospital when they’re suffering, it’s not like we go there for fun so why can’t they just help us and show that they care? They were about to just let me go as well but I cried and told him that I must have painkillers because I didn’t know how I’d get through the day in the agony that I was in. I had to let it slip that I work with medications in a pharmacy so he asked me to which ones I wanted and gave me a prescription. I hope your pain has gotten better ❤️