So... I saw my NHS Consultant on Monday about my leg pain and inability to walk when flaring and we discussed my surgery etc and I left the appointment feeling pretty deflated. Long story short she's told me I have to go on the progesterone only pill while I wait for my 1st Lap (hopefully less than 6 months) which I would normally refuse as I don't agree with the pill and it doesn't really agree with me but I've got nothing left to lose and will try anything at this point. When we asked 'what if this pill doesn't help my pain' she responded 'well then you don't have endo' - am I mistaken in thinking there is no evidence that this would be true? Surely it isn't that simple???😅 She also advised me to take ibuprofen and paracetamol together for pain management... to which I responded by telling her I am on Oramorph for the really bad days and Codeine for the other , slightly less painful days🙃 It just felt like she wasn't bother about what I was saying and wanted me in and out which was very different to my private consultant's approach (obviously).
Finally, the thing that really upset and confused me was that she said 'well your MRI scan doesn't indicate that you have endometriosis anyway so the leg thing might be unrelated'... however, my private consultant told me something quite different (see letter attached to this post) and as I'm having my surgery on the NHS, it will likely be with the consultant I saw on Monday so now I am worrying that she doesn't know the full picture even though she should have received all the info from my private consultant.
Is it likely this is a misunderstanding or has she read everything but seems to have a different opinion to my private gynae who she works under as part of his surgical team??
Thanks in advance from a very confused gal who is tired of having to fight for decent healthcare.
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endo_the_stigma
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So sorry this is turning to a fight. I’d get a copy of the MRI as well and send it and your letter to the Drs secretary with a note that you are unhappy with the consultation and CC PALS in as well. Send letter and unhappy email if you need to wait for MRI results. Chances are it’s not in your NHS file. Your private consultant won’t be wrong.
🤣 had to laugh at the ‘if only so simple’ I can’t believe she said that, forum wouldn’t exist if it was that simple 🤦♀️
If you look up pain management and Endo you might come across an article about Endo and leg pain treatment, I can’t post links on the forum.
I feel like its always a fight with endo because so many 'specialists' don't really know what they are talking about🙃
Yeah I have now emailed my Private Consultant's secretary asking her to forward all my reports and letters to my NHS gynae as I am worried that she doesn't know the full picture.
Yep, I was on the pill for 8 years and still suffered terribly - it just is not that simple hence why there isn't a cure!! xx
That’s great, give them a week and follow up on the NHS side of things, we have to be really proactive these days to make sure things get done. We shouldn’t have to but I’ve heard so much crap it’s just easier myself.
I don't know where this Dr came from, maybe Non-Gynae background, but DAM!!! I would request the Consultant hear all the details of this appointment- addressing to PALs as well - as her lies and lack of understanding of MRI results sounds dangerous for an endo sufferer.
Note the lie - Progesterone only pill will help and if it doesn't you don't have endo!???? I took the progesterone only pill for 10 years as told it would help my symptoms - it did not help at all - literally zero reduction in pain heavy bleeding or back, thigh, breast pain either. It does not work for everyone (or it would be the only treatment needed!!!). Then the idea that your MRI states you have don't have endometriosis (and no mention of the ADENOMYOSIS- which is a Horrifically Painful condition that I also have - and its NOT the same thing as Endometriosis!!!!) ........ Did she read YOUR MRI / REFERRAL - Or someone else's????
The location of your gynae disease is highly likely to be effecting your Pelvic Nerves - look them up - they can be in a different pattern from person to person too - but will definitely be involved in Peritoneal Endometriosis AND Adenomyosis!!!!!! Also rather confused the MRI suggests Endometriosis is the same as Adenomyosis- They are Separate Conditions!?
The Mirena coil does help some people - but I've tried it twice, once before children and once after - for 18 months and then a year - Was Horrendous- made All my symptoms worse (then had to complain to every management for months to get the dam things removed!!!!). But some find it helps brilliantly.
I think she read a different patients referral, or is not aware of these conditions - or is very new to role??? Paracetamol and Ibuprofen are Not Enough - they also cause DAMAGE when used long time!!! Opiods are actually less damaging to Liver - look up effects of long term Paracetamol and NSAIDS (ibuprofen, diclofenac, naproxen etc).. and it's WELL KNOWN that Adenomyosis is EXTREMELY PAINFUL and leads to poor quality of life and depression as it is so painful - normally a Pain Specialist referral is done when diagnosed with this.
I would NOT have any care under this Dr- would be a risk as either not qualified / experienced or doesn't believe in these conditions!
You need a Gynaecologist who SPECIALISES IN ENDO / ADENO. I had endo diagnosed 18 years ago, Adenomyosis diagnosed 5 years ago. Told only total hysterectomy will cure Adenomyosis- as mine is the whole uterus (called diffuse Adenomyosis), but a Specialist maybe able to offer other treatments. A regular gynae will not be able to treat these conditions.
Sorry to go on and on but your appointment details really irritated me!!!!
Thanks so much for your detailed reply I am pretty annoyed too haha
Totally agree, she was seemingly pretty damn clueless by all accounts which is scary! I have emailed my private consultant's secretary asking her to send the NHS gynae all my letters and reports etc because I need her to have the full picture about everything if she is going to do my surgery!
If I could afford the £7.5k to go privately with my consultant I would in a heartbeat but I can't unfortunately.
Hopefully the pill will help but I doubt it as it doesn't tend to work for me and my mental health is already pretty bad so I'm scared to make it any worse xx
Sorry you have been through this it happens a lot. Different doctors have different opinions and there is definitely a difference between. the NHS and the private sector. When you are paying you are treated as a customer on the NHS some docs and nurses treat you really well but many just view you as a pain and want you out of the way as fast as possible.
There is some truth in what they have told you about the progesterone only pill. Progesterone slows the growth of endo and IF the pop suits you it will stop a lot of the pain purely because it stops your periods. However it can make you bleed like crazy at the start so often you will have to step upto a double dose, this usually stops the bleeding. For me it massively reduced the pain as my pain is constant but was unbearable during my period. It relieved the pain far more than the excision ops I have had.
I doubt very much that your consultant can read your MRI, shockingly they normally can't that's why they have a written report from a radiologist (who can). Do you have a copy of this report ? Leg pain is very often linked to endo on the sciatic nerve which needs a very skilled surgeon. It's a tough call to make, some private surgeons will advocate surgery that isn't neccessary by going straight for a lap with no MRI for example, remember they make a huge amount of money from each op so they will often push for one. But your current surgeon sounds really unsympathetic and uncaring, she also sounds like she has not read your notes properly. I would call her secretary and say you need to speak to her urgently and ask why in her opinion your leg pain is not related when another doctor has said it is. Chances are though she will just get defensive. If you can afford it I would go for the other surgeon, bedside manner and empathy are really important and so is caring about the patient.
Yeah its all so conflicting and stressful being told so many different things and just having to do what they tell me otherwise I'm "not helping myself"...
Yes I have a copy of the report and when I first saw the NHS Gynae in december she did not have it so she had to have my copy but clearly didn't interpret it correctly... I have emailed my private consultant's secretary asking her to send everything over so hopefully it will get sorted.
I just want this surgery done at this point I am really struggling... xx
Sorry to hear this happened it is so frustrating when we are given conflicting information.
Regarding the pill failure to respond to progesterone only pills has been shown in 1/4 to 1/3rd of endometresiosis patients with progesterone resistance as the suspected reason. I was reading an excellent research paper (literature review) regarding hormonal options and endo ( in my case I have been reading to see what options I have post MDT surgery)
I have tried 2 types of pop unsuccessfully prior to surgery but its educated trial and error. I was afflicted with so many symptoms I was willing to try anything.
I agree with moon_maiden to get your mri report and forward it to PALS etc that you had been told prior and as per report suspicion for peritoneal endo and adenomyosis.
I have had sciatic signs , right leg pain and reduced sensation during my period. I no longer have this post endo excision surgery. I had spoken to a neuroeplvic surgeon at one point prior to op ( when both legs had issues not just one) and he said endo can be a couple of cm from the nerve itself but can still aggravate them. There are cases with endo in the sciatic nerve directly ( less common). Having signs when on your period only you'd think would suggest endo related.
I am stage 4 so have extensive lesions and nodules removed prior to op. From what I have read deep endo is more likely to be associated with nerves " deep endometriosis generally infiltrates into richly innervated anatomic sites, a situation less frequently observed in cases of superficial peritoneal or ovarian endometriosis" ( from the paper above). Another really important consideration is the uterosacral ligament which can have limb signs and back pain if endo has affected this.
Thank you for replying😘 Its always nice to hear a similar story to remind you that you're not alone but its also sad to know so many others have to deal with crap healthcare.
The leg pain has to be connected because of when it happens and what sort of pain it is... I just don't get her reasoning for that explanation at all and was very dismissive.
Yes I completely agree regarding the leg pain on accounts its cyclical etc unfortunately I had been dismissed by general gynae regarding this as well ( not to mention my original severe pain dismissed as a follicular cyst ongoing thus stage 4 endo/ adenomyosis completely missed).
Definitely raise it furthur with the hospital and ensure you have copies of your mri, private consultant reports etc. Do you know if the last consultant was an endo specialist or general gynae? They just sound quite misguided and it is do sad you never got the support you need. On a larger scale her misinformation and dismissive nature is another hurdle in diagnosis and support for other patients so I'd personally want the hospital to be aware.
I'm pretty sure she is an endo specialist as she is on my private endo specialist's surgical team? not 100% sure though. Totally agree about her dismissive nature etc its very disconcerting!
Sometimes I have got the registrars - junior/ training endo specialists at checks but they normally say I am the reg for whichever consultant or team etc. I had seen one at my last check but she was excellent and still asked the consultant after any questions I had left. Still regardless of what her role is I agree definitely not acceptable and you need more clarity and support. All the best.
Sounds very similar to mine Retroperitoneal fibrosis and uterosacral ligament issues, slight adenomyosis.
IUD on its own was awful made things worse but IUD and mini pill after 4 months started to really help. Finally stopped periods. So no earth ending pain but I do still have pain which I am in a lot of medication for but at least the pains meds now can keep the pain at bay. I feel so much better even though if I miss a dose I am reminded I am still unwell, but controlled pain is better than uncontrolled pain!
I also found that even when taking strong pain killers I MUST take paracetamol and anti inflammatory (diclofenac) as wel. They work synergistically and make everything work better. If I didn’t take the paracetamol alongside strong pain meds, it was like I hadn’t taken anything.
Your consultant looks like they have referred you to the endo clinic on the NHS? Can you confirm with them as the other gynae does sound general: I would say that to e appointment for the endo clinic had not come through and that was still normal gynae.
Ask to see the pain specialist attached to endo clinic. Mine had given me an opioid patch to wear 24 7. Alongside iud, mini pill and paracetamol and diclofenac. Finally pain is controlled. He also gave me bAclofen for extreme cramps which I no longer need.
Pain specialist also wants to give me injections i my back which I believe is to see my pain is nerve related. Something I feel will hopefully help you.
Ask your Gp to refer you to pain management as well requesting anyone with endo knowledge. Get the ball rolling.
Annoyingly I just saw a different consultant and found him to be so cold and dismissive? Despite surgery confirming and me saying I’m still in pain. Just fed up of constantly having to justify that I am actually ill!!
Good luck.
Pam.
P.s I paid privately for a scan and despite sending it multiple times. I always took a copy to appointments as they never had the full details on the system so gynae may not have had the same details you had?!? Ju st a thought. But push to be seen by specialist tertiary clinic. Look up the gynae you saw on hospital website and check which clinic she works?
Sorry to hear you have suffered so much too it sucks.
Yes I went to the endo clinic privately and asked them to refer me back to the NHS for my surgery as I can't afford it privately and I clarified with the consultant I saw on Monday that she is one of his (private endo specialist) team and she confirmed she was so I'm just concerned she hasn't got all the relevant paperwork. I have emailed my private specialist's secretary asking her to send on all my records from them to the NHS consultant so hopefully it will get sorted but who knows at this point.
I had a similar situation but hadn’t gone private with tests just a ignorant consultant who couldn’t be bothered with me!
Basically I had been seeing her for 4 years with extreme heavy bleeding and test after test she kept saying the same thing it’s not endo because I wasn’t in a relationship so I couldn’t say if sex was painful, I started a relationship with my now hubby and after discovering sex was in fact painful I thought ok cool she will listen, I dragged him along to appointment with me so he could have a better understanding of the pain and constant bleed etc she sat and went through every test result and scan and said no you still don’t have endo u are just unlucky with periods so I demanded she had a look inside me something she had refused to do!
She said well I will just so you basically understand u don’t have endo but u are risking your health and life for a operation when u just have heavy periods, we left appointment and my hubby turned to me and said so u don’t have endo, we argued in car park because I know my body I know what’s right and what’s wrong with it, strangely she had me booked in a few weeks later and when I arrived on morning for surgery she came to see me and said your first on list I don’t expect to be longer than 30 mins, 40 mins at most I’ll fit the coil whilst I’m in there and then your periods will start settling down after this!
I went down at 8.30 and woke at 12.15 in the worst pain to find out I do have endo and it was a mess in there a cyst exploded whilst she was in there and she couldn’t get all the endo as it had spread to a major blood vessel on my kidneys, she said although she is a specialist my endo is to advance for her so she was transferring my treatment to someone more experienced, basically she knew she was wrong all the while and once I was on the land of living again I wouldn’t be pleasant to her anymore!
My new consultant explained everything and said the back of my womb is much thicker than the front which could indicate adenomyosis I’m booked for full hysterectomy on 6th next month but with a consultant I’ve never met as mine is out the country for 6 months I’m having the surgery as I want to be me again but can’t lie I’m nervous about having it by a consultant I have never met and he doesn’t know me and what’s been going on etc.
It shouldn’t be so difficult to be heard, seen and understood. I’ve been on every pill available and even when bleeding has been stopped I’m still in a lot of pain, I’ve recently had ultra sound which knocked me up for two days after but came back clear 🤷🏼♀️ I think they rely on these results more than listen to us and think ok maybe that’s wrong! We know our bodies we know when something is wrong and isn’t working properly and we certainly don’t choose to feel the way we do!
Really hope u get sorted push push and push and don’t let me tell u differently, ask for a second opinion if needed it’s you that’s living with it not them
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