Hi ladies - has anyone had a positive experience with PALS?
I was advised by the consultant that I saw last week (it was a different lady to my typical Dr) to call my usual consultants secretary for my blood results as she has concerns regarding my iron count and to discuss the expedite letter my GP has sent. The secretary has advised on the phone today that they cannot give results over the phone and that my consultant hadn’t even reviewed my bloods yet and she genuinely couldn’t get me off the phone quick enough. She also never returns my voicemails and is always so rude when I do speak to her.
I’ve just called PALS as I’m so fed up my physical and mental health is in bits, my GP signed me off work last week because of how stressed I am, the constant pain, bleeding etc and wrote the expedite letter to my consultant because of this.
Has anyone found that PALS support / intervention useful? The lady on the phone from PALS was nice and said I need my blood results and my surgery date and that she would raise it with gynaecology for me.
I feel like I’m going round in circles, as soon as I seem to get some movement to get closer to answers I then come to a halt. I’m repeatedly being told that I’m urgent / priority, very symptomatic, need treatment ASAP but no answers. I’m now very realistically considering somehow finding the money for private healthcare, I can’t continue like this I’m 24, constantly bleed, sick every day, bleed when I go to the toilet, constant pain, fatigue the list goes on I don’t leave the house just feels as though I’m existing and not living. I had a complicated miscarriage in June resulting in a haemorrhage, clots in my womb and requiring an emergency D&C.
Sorry for the rambling post, very frustrated, deflated etc!
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So sorry about how your feeling not much experience with pals I did seek advice from them once but they transferred me to another complaints department who then transferred me somewhere else it does sound like they are getting you somewhere I'm sorry your feeling down With bleeding do you have anything to manage that? here if you need to chat about anything 😊x
Thanks so much, it can really take its toll can’t it. I have tranexamic acid to ease, I came off norethisterone they didn’t agree with me at all. Just hoping to get some help sooner hope you’re okay hun x
Nothing helped me in the past for the bleeding no pills no tranexamic acid nothing. I'm hoping in the future to try the coil and see if it works I had a good diet but still had severe bleeding.once I managed to control the pain I tried the progesterone cream online as I had lost hope with getting help by then and it did work well for me as us endo ladies are supposed to have less progesterone which supposedly helps suppress the endo which is why they recommend pills.i found the progesterone more natural on my body The bleeding is atrocious so I do know what your going through I started bleeding out my bowl on period time aswell it really puts you down
Hi, ask your GP for help in chasing this up, they can contact the consultants secretary. If you did see your consultant privately, it shouldn’t effect you having op on NHS. I did a couple of months or so back.
It’s not easy getting answers and I’m so sorry you have difficulty with the secretary.
The consultants secretary did explain to me that it’s a difficult time and they needed to be able to book a three hour slot and have a bowel surgeon available if need be. It doesn’t help when you’re in pain and life is on hold so much.
Thanks so much I’m going to speak to my GP again today to review my pain medication and I’ll also discuss this with her to try and get some support. Fingers, toes and everything crossed!!
I'm sorry to hear about the hard time you are having. Sometimes it just takes that one last thing to break a person after battling such horrific health issues, doesn't it?
I have dealt with PALs recently and was initially referred to someone who deals with gynaecology related things. From there the process was initially straight forward and relatively quick. I am not sure if this might vary between the PALs departments in different trusts or not. It did involve me writing a formal letter of complaint/query regarding the issues I was having. I was warned that turn around times were extended due to the additional impact Covid has had on the system.
I was in turn contacted by a head consultant for the trust I've been a patient of (before the end of the extended turn around period, which is later this month) and the initial contact was promising with my concerns seeming to have been taken with serious regard.
This was the end of October and they were to follow up on their end and then the plans were to contact me in November about arranging an appointment to have my care properly addressed going forward.
I've not heard back yet this month, but tbh I am not entirely surprised with the full lockdown being announced, and the extra stress on the hospitals. It won't help that where I am being seen has a high rate of infection and hospital admissions.
Long story short, I was initially dealt with swiftly, given realistic turn around times, and then had an addressal of my complaints by a senior person at the trust. Ongoing care is currently pending. I did go back two years in detailing every single thing that I had an issue with iro my care. To give you some time guidelines, my initial query to PALs was emailed approx the end of June. I also added to the time frame as I took a week or so dredging up the details over the two year period and double checking dates etc. when asked for a written list of queries in connection with my complaint.
In the end I went ahead with the process for two reasons. First off, I'd had enough and couldn't deal with any more. Years of getting worse, getting no where, and inconsistency in care - not only based on who I was talking to at any given time, but also between one interaction and the next and in communication between both team members and to my GP office are the tip of the iceberg. Second, because while I might be one voice and one person, unless we all collectively put our voices together to speak out about the ongoing issues with womens health care, they will continue to stay the same. I don't want to keep going through this, and I certainly don't want other women to either.
I understand the immense emotional depths it takes to invest in making a complaint of this nature. Dredging up every negative thing. Revisiting how long you have asked for help and yet continue to remain helpless. Reliving the symptoms. Acknowledging the ongoing trauma that continues, because that is what it is. This pain and the list of symptoms. It is all trauma on our bodies and it has lasting impact, both physically and emotionally. However, if you can find it in yourself to make the complaint, please do it. Do it for yourself. Don't for the women that suffer along side you. Do it for the ones that can no longer.find their own voice beneath the anguish. And don't for all the future girls in the hopes they have a better experience than we all are having currently.
I truely hope you find a way forward and a solution that results in you getting the appropriate care you deserve - whether via the NHS or choosing to go private. However it happens, you deserve to be treated with compassion and respect and to receive treatment that coincides with what is best for you.
I've bothered on, onif you made it this far, thank you for reading it all. I hope there is something within it all that you find helpful. Good luck, whatever your decision is going forward.
Thank you so much I think you’re completely right and it’s disgusting that we have to go to these lengths. PALS did come back to me on the day, the lady was compassionate and reassuring - they’ve advised that due to the pandemic the theatres are being predominantly used for Cancer patients which I understand however I’m to contact PALS again if I haven’t been seen to and treated in the next 8 weeks, she advised she hoped it would be sooner but if it comes to that I’m to get in touch with them and they will chase again, I’ve had a cry an the reality of suffering this for another few months and I’m going to go back to my GP to review my medication to get me through that time as I’m struggling to work at all anymore. Thanks so much for your insight and response, I really hope you get the care that you deserve. X
Hi, totally understand your frustration. My GP surgery doctors are able to access any scans, bloods etc done at the hospital so I'd advise you book an appt with a GP you trust and ask them to access the hospital records. I've done this before when the consultant appt is a while away and I just want the results. The GP can tell you the results.
Pals sometimes are useful but not always.
Think the option above is best. What have they said about the blood when you go to the toilet? What have you tried to ease the pain? If you private message me I'm happy to tell you about what I've tried that helps. I can't post on here as admin deleted the links as they're not links produced by the charity.
Thanks so much for your response they don’t seem to be acknowledging the bleeding when I go to the toilet and when I say it hurts - it really hurts!! I’m taking x2 500mg of cocodamol per day and ibuprofen as well as a hot water bottle and I’ve just began taking a bath in Epsom salt. Thank you for the offer I will drop you a message. X
I’ve spoken to PALs a couple of times and they’ve been really helpful and managed to expedite my referrals. After waiting 6 months they managed to get me next day appointments!
I’ve also thought about going private, but it’s usually the same drs as nhs do for me wasn’t worth it.
PALS were very supportive and responsive, sadly it seems that the situation locally to me is getting so much worse with Covid now that the hospital are prioritising the theatres for cancer patients and have halted all other general surgery which I completely understand. PALS have told me after speaking with gynae I should be treated within the next 8 weeks and if it is that I’m not I’m to contact PALS and they will chase it up. It’s so tough and I appreciate that the NHS are against it at the moment. I have to just keep reminding myself that it won’t be much longer
I’m so sorry you’re dealing with all of this. You need to get an appointment with a gynecologist whatever you can do. I have heard many women hear going private for the specialist appointment but then they’ll book you through the regular health care system. I am in Canada so I can’t help you there. Here I went private because no one would listen to me, my specialist was able to refer me to the best Endo clinic in Canada and it’s covered by standard medical.
Please don’t let this go on too long. I am 36 and was just diagnosed in February with stage 4 recto vaginal endometriosis. I have had painful periods for as long as I can remember. I even remember being a teenager (17 or 18) and when I went to emergency they gave me a pregnancy test and that was it. So I asked my doctor and she said painful periods were normal. And so began the journey of misinformation from doctors. I asked my GP about endometriosis around 6 years ago, this was after a miscarriage and continuously trying for a year to have a baby and not getting pregnant, and she laughed at me and asked what would make you think that. I also at that time was having 7-8 bowel movements a day and on my period every bowel movement I would get a sharp knife hot poker up my rectum (sorry tmi). I say this because I have a high pain tolerance so I just thought it was normal. But my surgery was horrible and hard to recover from, I almost ended up with an colostomy bag. It took 3 hours for them to remove my rectum that was pulled up and over my vagina. Please don’t let it get to where I was. I spent the money and paid to see a private doctor that was then able to refer me to the best Endo clinic in Canada which happens to be msp (our medical standard services) covered.
I also have 16 other chronic conditions including adenomyosis and fibroids. I say this because I have done a ton of research on my conditions and anything along the way I thought might also be going on lol. I think you have both Endo and adenomyosis. My specialist said adenomyosis causes uncontrolled bleeding and Endometriosis is usually the culprit for severe pain. I call adenomyosis endos evil twin sister because it is the same implants but they grow in the uterus muscle lining. So the only way to remove it is a hysterectomy (not a cure for Endo though).
Everyone hates this and wants a “natural” way but Endo isn’t that type of disease. I really have to stress the importance of birth control of some kind. There are 4-5 different types then each type has lots of sub brands. You don’t have to suffer, you don’t have to have a period either! I haven’t had one for over 3 years. You can only have so many surgeries before you’re left in permanent pain.
There are a few things you can do for yourself now..
1. Find a pelvic physio who specializes in pelvic pain or endo. They can give you different exercises to strengthen, help with penetration and sex pain, help with incontinence, bowel pain, etc.
2. Eliminate inflammation inducing foods. Everyone hates this one, and I’m not saying you can’t cheat here or there but be prepared for the consequences after you haven’t had it in a while lol. Eliminate sugar (added, fruit sugars are okay), dairy (coconut and almond are great alternatives, and cheese from certain parts of Europe where they haven’t bred the cows to produce an extra protein), gluten/wheat (schar brand is amazing!), and soy (produces estrogen in the body which extra isn’t good). Also try to reduce the amount of processed foods and eat as organic as you can.
3. A heating pad is your best friend. Don’t try the hot water bottle, the pressure hurts my uterus.
4. Magnesium is your second best friend. When you’re feeling cramping and you can, run a warm bath with 2 cups or Epsom salt (magnesium!) and it will help to soothe. I take 400 mg of magnesium in capsule form at night, helps with cramping and to sleep. Also amazing if you have restless leg syndrome.
5. Keep a diary of your symptoms and what you were doing when it happened or what you were eating. Maybe you can figure out some of your triggers.
6. Make sure you’re seeing an Endo specialist. Do whatever you can, don’t find one that just has a special interest. Most general gyn don’t know much about the condition. They tend to only do ablation (basically removing them top and leave the root). Instead of the gold standard of excision where they remove the whole implant. I have read so many stories of woman either coming out and they find no Endo or are still in just as much pain.
Sorry about the novel! Please feel free to pm me if you have any questions. You got this! Just keep hanging in there. 💕
Your insight is amazing thank you so much. I won’t give up, I refuse to let this beat me and I’m to stubborn to not be heard lol. I guess it’s such a struggle for Endo sisters as it is never mind in the middle of a pandemic
Interestingly my consultant hasn’t mentioned Adenomyosis to me only Endo and a potential issue with my tubes hence wishing to also perform hysteroscopy. I do suffer with a lot of intermittent bleeding which would make sense!
I really appreciate all of your advise I can’t put into words how helpful your post is, from the bottom of my heart thank you xxx ❤️
You’re very welcome. If I can help one person suffer a little less than I had to get to where I am then I’m happy. I just wanted to say you should do some research on the hysterectomy. A hysterectomy is only a cure for adenomyosis. It isn’t for Endo as it can produce its own estrogen. Endo feeds on estrogen. It can keep growing well after having a hysterectomy. I would do some reading on here as well because there are many ladies who have been given this info and ended up in just as much pain after.
Hi there, I am so sorry to hear your going through this. You have basically just told me my story through your own words, bar daily bleeding. I too am getting nowhere with the hospital and the secretary I speak to has been so rude and 3 times now iv caught her out in not doing her job properly. I too am thinking of trying to find the money to go private. I’m at a loss, it’s really getting me down now. I managed to finally get an MRI 3 weeks ago but the secretary didn’t say anything apart from “the dr is dictating a letter for me to send to you but she hasn’t sent it yet”, I said did it show anything, she said the dr is escalating my case but muttered they didn’t find ENDO on my scan. I’m so scared they use this as an excuse to stop my care and I’m back again to square one after years going through this. The past year has been particularly bad. Iv never heard of PALS before? What do they do? Iv also been referred to fertility as we have now been 4 years of trying without success. Had a video call yesterday and she was hopeless. She made me feel even worse. Told me they wouldn’t and couldn’t help until I stopped smoking, lost 5kg and got my BMI below 30. It’s only at 31 now!!! The care we are all receiving right now is atrocious, and they just keep using COVID as an excuse!! Hope you get some positive movement and get the help you need.
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