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Endometriosis UK
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Feeling SO let down

I've posted a few times since I found out I have stage 4 endo on Fri after 4 years of severe fatigue, gastro issues, back & hip pain. I had a lap 2 years ago that ruled out endo. Was eventually seen by orthopaedics for my back & hip pain and after an mri is told about the endo. The consultant admitted he knew nothing about endo and just literally read out the mri results. It sounded like a horror show in me, it seems like it's everywhere and they couldn't locate my ovaries. So I was left with just this raw info and booked to see my GP hoping for some answers. I went today armed with a million questions... She didn't know of my diagnosis, couldn't access the mri results and seemed to have no real endo knowledge other than the basics. I told her I wanted to get referred to the specialist endometriosis Centre which is really close to me, the nearest city. She's never heard of it and was very keen on on focusing on a gynae referral. She said she wanted to speak to the gynae service to see what they thought and said she'd phone me back in 2 weeks. That means 3 weeks after diagnosis I'll still not have had anyone to talk to me about what this diagnosis actually means for me. I feel so let down.

I'd been made to believe all this time that my symptoms were psychological and now I'm told I have a severe case of endometriosis and I just don't know what I'm supposed to do with this information. I've been off work sick for 7 months, I'm in the process of trying to become bankrupt because my finances have become completely out of control due to me being unable to work. I reduced my hours initially to see if I could manage so my salary has just gradually reduced over the past 2 years ago I basically cannot keep my head above water now. I just feel so overwhelmed by everything. My entire life feels like its unstable.

I honestly don't know what I would've done without this site, its been my only source of support and information.

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Hi there

You poor thing! I really do feel for you! I, like many other women with endo, have also been let down countless times by GPs and the medical system in general. It really isn't good enough and I don't know why in the world we have to put up with it.

If I were you, I'd change my GP asap. The MRI clearly shows endo and it's the GP's duty to refer to you the Endo Centre you talked about. As you rightly say, having to wait another 2 weeks just isn't good enough...it sounds like she didn't believe you!!

I've recently changed GPs and gone from a practice where no-one (for a good 18 years) knows anything about endo at all, or anything else about 'women's problems', let alone care, to a new practice where the first GP I spoke to was kind and caring and very clued up about endo. I really should have changed practices a long, long time ago.....

If I were you I'd also contact the hospital (I'm assuming it was a hospital?) where your MRI was performed and ask why the results weren't sent to your GP. Do you have a copy of the MRI report? If not, again I'd request one and say that without it you're not being believed by your GP and you can't get to see an endo specialist.

Please don't let the GP just refer you to a general gynae...they're often totally useless and may know next to nothing about endo - you need to push to see an endo expert, otherwise you may be stuck again waiting and waiting and being constantly fobbed off.

Hang on in there and please don't despair..where there's a will there's a way! Keep on pushing and demanding to see the right person sooner rather than later. I've got absolutely nowhere being passive and 'nice' in the past, and as you say, it just makes you feel that your whole life is out of control and unstable...it's only when I've finally started to kick up a fuss that I've got anywhere at all. Being more assertive with the medics I've seen and the admin staff seems to have had a magical effect on the way I've been treated lately. In general I feel I'm being listened to and treated with much more respect now than I ever have been in the past and it's finally helped me feel much more in control of my disease and my life in general.

Best of luck going forward, xx

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Thank you so much for taking the time to reply. Your words have helped so much. I've only recently moved to this current medical practice after moving house where no one seems to have a speciality. My last practice, each GP had a couple of topics that you could make sure the GP at least had an interest in the area. There are a few other practices I could go to though so I'll look into that tomorrow.

Thanks again.

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Hi there!

No problem at all - I'm so pleased I could be helpful 😊!! As I said, I really do feel for you - you've been through a truly horrendous time and it's about time you were finally treated by someone who knows what they're doing!!!

Yes, definitely I think it's well worth finding out if there are some better practices in your area...the GP you saw just sounds hopeless to me (pretty much like my last one, unfortunately....). Really do hope you can find someone much, much better who will push for you to see the right person asap and help you get your life back on track.

Hang on in there - when you've hit rock bottom, the only way is up!! Keep on trying to be as strong as you can and don't take 'no' for an answer!!

Sending you all very best wishes moving forward, xx

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Hi there

I’ve been there and really feel for you. I agree with Jjeemm but right now you need a referral quickly for your own sanity as much as anything. If I were you I would check out the NICE guidelines for endo- it will outline what GPs need to do regarding referrals to endo centres. Then go back to the same GP ( another GP in the same surgery won’t want to contradict their colleague) armed with this information. It should be a no brainer in your situation as it’s so close. Don’t leave until you get that referral. You cannot be refused when you have a scan proving you have it. Most of us are referred on symptoms alone.

Best of luck.

X

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Hi weekari,

I'm really sorry you feeling let down by health professionals. I agree with Maxi72 with regards to going back with the NICE guidelines which you can find here:

nice.org.uk/guidance/ng73/r...

Hope this helps and take care!

RicEndoUK

Volunteer Moderator

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Thank you for sharing the link. I read through the nice guidelines in my GP surgery car park after the appointment. I think this is what infuriated me even more as in just a few minutes I could see that that I should be referred to the specialist centre and that I met the referral criteria. I'm actually a clinician in the NHS (psychologist) so I think I'm going to have to put my work brain into gear and use what I know to help get me the help I need. I think I just feel so vulnerable, I just want someone to look after me and tell me what I need but clearly that's not going to happen so I need to get my head in the game.

I really feel this system is so awful though. Endometriosis really seems to be vastly under researched and medics seem to be very under trained. It's like the under dog disease. The feminist in me feels it would be very different situation if men got this on their reproductive organs! 😤

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This is such a common story - you are not alone. I have a rare type of endo 1:6 - it is not in my ovaries or uterine areas. Mine began in my abdomen... after ruling out all possible surgeries that I never had the typical causes such things it baffled more than 4 different GPs. Even the sonographer doing ultrasounds was telling me there are black dots they think are just scar tissue or blood spots. After 2 surgeries in year, and the lump still grows back. In 2014 I was told it was a hernia and to watch how things go... then in 2016 I was sick of the pain, and it had started bleeding through my umbilical onto my clothes at period time. That is when I did my research, went to a different GP and that is when the first surgery happened, there and then. Of course 6 weeks later the 2cm x 2cm lump had grown back to its original size because they didn't get it all the first time. 6 mths later and in surgery again... same thing happens - different hospital different surgeon. It is not their fault. Now I have 2 scars around my belly button - both ache and turn purple-red at period time. I suffer severe migraines... My appt with new gyno is Monday. I want a reassessment and a partial hysto as it will stop the migraines and sooth the hormonal imbalances. After each surgery the estrogen levels in my body go nuts - I have not been on the pill for years and years - but for some reason removing the endo actually causes my hormones to go silly and rapidly regrow the lump. Recently, the last time I bothered to see a GP and simply chose to wait for my name to move up the elective list for a gyno, I showed her 2 painful lumps under my armpits - she shrugged at me. Ignored it and essentially told me my issues is that my weight is bothering me. Now I am 82kg and 5'7 tall a size 14 of athletic build... I have had 3 children and am healthy... she made me feel as you do - that I am some kind of hypochondriac. But I have since learned of this rare type of endo - it starts anywhere in the body, in scattering formation - like gunshot pellets anywhere on your body - and they just grow. So, I once again am changing GP after I see the gyno. Oh, and I am in Australia. The GP who ignored me was from the UK... the GP who originally diagnosed the Endo instead of continuing the misleading story all the others had told since 2014 (most of which were UK GPs) - he was German/Swiss trained. So I recommend finding a GP who is not traditionally trained because they refuse to learn anything outside their 50 yr old textbooks. I found all my info online, printed it out and took it to the GP visitation. The GP who ignored me, she told me that I had to stop researching stuff because it was contradicting her advice and remedies... of which ones was an antidepressant that makes you sleep all the time to get rid of migraine pain... Now I don't know about you girls - but I am a full-time mum, full-time employee, and full-time student at law school... now tell me if sleeping all day is a good solution to my problem. My opinion - don't listen to ANYONE telling you that this is not real... it is. They just can't see if for all their textbook training. Best of luck xx

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I'm so sorry to hear what you've been through. You've really motivated me to fight though. Thank you for sharing and I hope you get some relief soon. Xx

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Thank you, you are not alone, that is the most important thing. xx

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My sister has suffered from super heavy periods and migraines for years. She was never diagnosed with anything, but thinking now I reckon she had endo too.

She had a hysterectomy about 2 months ago for her migraines and she has never felt so good. She still has the odd one but very very mild. They used to knock her down for days at a time.

X

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Hi KimPV

Thanks so much for sharing this. I'm so pleased your poor sister is feeling so much better now 😊!

It's really 'funny' you now suspect your sister possibly had endo. I was thinking exactly the same thing about my poor mum (no longer here, sadly). She also had the most terrible, terrible migraines for years every time she was due to have a period (just like her mother and aunts). Unfortunately none of the doctors my mum ever saw connected the migraines to her periods (pretty obvious I would have thought, but hey....) and therefore no-one considered that she might have had endo or any other disease related to her reproductive organs. I'm sure that the endless pain and suffering my mum underwent for so many years totally exhausted her in the end. She had to take early retirement and effectively had many years of health taken away from her. In the end she died from another auto-immune disease....so it's looking increasingly likely to me that she also suffered from endo.

It just makes you wonder how many women out there are living their lives in pain without being properly diagnosed...

Hope you're well, by the way and not suffering too much yourself, X

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Thank you KimPV. I am still waiting to find a Dr who will let me have it done. So far, all I get is a big fat 'that won't stop the Endo' - but of course, I believe it will slow it down and it will decrease the migraines. This forum has helped me learn that there are options, and options make things possible when you find the right GP. :-) xx

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If you want anything answering pm me and will give you as much help or advice possible. I have been suffering with severe endometriosis for 6years had every treatment going apart from hysterectomy. But may endo has be growing since 15yr old and am now coming 30. I was off work for full 6months at one point and hand nothing moved back home with Mum and dad as I was to poorly to look after myself or work. Was with 3 different specialists at first then went from 2 different gynae specialists to then finally being referred to the endo clinic . It may take a long time but you will get there and you need to rely on support and help where ever you can get it from! If there’s someone you are close to talk to them, I couldn’t of gone thu this without my mum she has been my rock thu it all even tho she gets more upset than me lol. But any questions pm and I will help I feel like an endo experts been thu almost everything to do with it lol xxx

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Thank you for sharing. I definitely will have to contact you for questions once I get more information.

You must be made of something pretty amazing to have got through all of that.

Do you mind me asking what your life is like now? Do manage working? I've been off sick for 7 months and know I can't go back to my job, it was a poor match for me as it was so emotionally draining and I'm quite a sensitive person. I'm trying to think about what I could do job wise and since the diagnosis I'm thinking that a typical 9-5 is not going to sit and I'd be better with something more flexible. Thankfully my husband earns enough to keep us afloat but not for ever.

Thanks again. Its so good to know I'm not alone with this.

X

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Hi

Am not surprised you feel overwhelmed.

I don't think many people realise how debilitating endometriosis can be.

You are right to want a referral to a specialist.

I was nosed with endo inside my bladder. I was then referred to general gynaecology. Waited ages for the appointment then as soon as I saw her and she read my notes she told me she couldn't do anything for me. I had Stage 4 endo and she referred me to the Specialist and apologised that this hadn't happened in the first place! Saw specialist and had surgery within 4 months.

It is a diagnosis that affects every area of your life, it must cost millions in sick pay and the costs to relationships and self esteem are incalculable!

Hope things get better for you soon x

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You're so right. It just seems like such a hugely ignored illness that has massive implications for people's lives. It makes me angry.

I'm just so grateful for this forum. I don't know how I would've coped over this time since the diagnosis. X

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