Upset after another useless doctor's appo... - Endometriosis UK

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Upset after another useless doctor's appointment

zsmith76 profile image
24 Replies

Just left the doctor feeling like crying.

I am 41, have had 2 kids (one by c-sec), have always had heavy periods and taken tranexamic acid / mefenamic acid but recently things have been worse.

More recently I have started getting pain at the end of my period (last day or the day after) which comes on like a wall of pain. It happened this morning and I ended up curled up in agony, my husband wanted to call an ambulance as I was incapacitated with pain but after about 20 minutes it did subside after taking ibuprofen.

My period was so heavy this month that I went through 5 super tampons in 1.5 hrs with blood clots so large pouring out of me that at one point I actually wondered if I was having a miscarriage.

Earlier this year I went to the doctor about it. She gave me an internal examination and said my uterus felt bulky and sent me to have an external ultrasound scan as she suspected fibroids. When I returned to the doctor they said the scan was clear and my options were to have a coil fitted or to do nothing.

After the painful episode this morning I went back to the doctor to discuss. The doctor was a very young man who completely lacked any empathy, who pretty much kept shutting me down every time I asked a question. When I asked what could be causing the pain at the end of my periods he said that it is 'bizarre'.

He said what did I think it was and to be honest I didn't feel comfortable asking about endemetriosis because of his passive aggressive attitude to me.

He said he could refer me but as it is just heavy bleeding and pain I would not be at the front of the queue and he 'wouldn't like to think' how long the wait will be. When pushed that translated into 6-8 months which, after years and years of pain doesn't actually sound that long to me.

I left the appointment close to tears having been made to feel like an idiot and as if I was making it all up.

Has anyone experienced this attitude from doctors? All they want me to do is have a coil fitted when I want to find out if there is something wrong.

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24 Replies
AllWeNeedIsluv profile image
AllWeNeedIsluv

Hun I don't have long. I'll get back to you later. Book anther appointment and tell them you think you have endo I did that in fact I told them I believe iv got it. They have to listen to that and do their relevant tests and refer you. Book with a woman if possible or someone different 💗🤗😘

zsmith76 profile image
zsmith76 in reply toAllWeNeedIsluv

Thank you for your message, much appreciated.

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply tozsmith76

Hi hun are you ok? Hope your feeling better now complain about him and don't book to sew him again xx

zsmith76 profile image
zsmith76 in reply toAllWeNeedIsluv

Thank you! I emailed the practice manager yesterday and full on complained. The thing is I don't know if it is endo or anything else but he made me feel like I was making a fuss over nothing!

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply tozsmith76

Well you know your body and you knowv something's not right. When drs do this 💩they tend to make us start doubting our own selves. It's completely out of order. Did you get a referral? Where did he refer you too 💗🤗😘

zsmith76 profile image
zsmith76 in reply toAllWeNeedIsluv

Thanks! He didn't make me doubt what I've been through as that I'd fact, just made me feel completely belittled. I made not a moaning kid or a hypochondriac just someone who wanted a bit of help!I think he's referred me to a gynaecologist but I'll find out this week when I follow up on my complaint to the practice manager. Arghh!

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply tozsmith76

Awww that's good. I was just thinking out aloud then for years iv been made to feel that way 18 years it took me to get diagnosed and even then I don't think they did it properly hence why I'm going to see a specialist next week. Wish you luck hun and glad your complaining to the practice manager maybe he'll start treating ppl better then. Let us know how it goes 💗🤗😘

Yes I have experienced this sort of crap. I'd always had awful periods right from the first one at 13, but in 2014 they started getting increasingly worse, and I was getting bowel symptoms that I was quite distressed by. To cut a long story short, I had repeated visits to see a male GP at our surgery who did a few blood tests which all came back normal, said me I didn't have the symptoms of endometriosis (I asked), ignored rectal bleeding and anaemia, and told me I had IBS.

I was eventually diagnosed with severe endo in january 2016 with bladder and bowel involvement.

There are two things you can do at this point. The first one is to go back and see a different GP. It's worth asking if anyone at your surgery has a special interest in female health - there is a GP at our surgery that does and I had no idea. She was the first to look at my symptoms and link them to endo. The second thing is to make a formal complaint about your appointment today. Telling you it's bizarre and then asking you to self-diagnose isn't good enough. I understand that he was young and inexperienced, but 1 in 10 women have endo. It's not some rare disease that they never see, and he needs to do better. I know how hard it is to find the energy to do these things, but please don't just leave it, because if it is endo it will only get worse and the pain you are experiencing now may just be the beginning. x.

zsmith76 profile image
zsmith76 in reply to

Thank you so much for this. The funny thing is I am normally quite outspoken and confident but I felt so belittled by his response. At least the original (femal) doctor I saw was quite factual about it ie could be fibroids whereas this young doctor was clearly cutting me off and made it clear he was not willing to discuss it any further. So humiliating.

What he did do though was refer me on to a specialist - aside of complaining to the practice manager (which I will do) I wonder do you think it is worth seeing another GP too?

Thank you again, hugely appreciate your response.

in reply tozsmith76

Did he refer you on to gynae? That is a positive step in the right direction.

I would go back and see someone else because I have found it really helpful to have someone at my GP's surgery who I know so I don't have to explain everything every time I go in. I have built up a relationship with one of the nurses at our surgery and I always see her now, and it has also meant that if I need to see someone, the receptionists know that they have to put me on her list for that day even if she is full. Endo treatment sadly is a journey and it can be a long one and she has helped me through multiple surgeries and multiple drug treatments. I had to have a hysterectomy and have my ovaries removed earlier this year so she's now supporting me through surgical menopause and the minefield of HRT. It has helped tremendously with my mental health. You may also find that it can be a long wait to be seen by a specialist and you need support with pain relief and other issues during this time too.

Fooofs91 profile image
Fooofs91

Hi 👋 love, I went through this for two years , constantly sent away like I was imagining things I was honestly made as If I was a hypochondriac, I used to cry a lot but I realised crying doesn’t work you have to be really firm, my pain always came after my period so endo was never a diagnosis until one day I lost it and told my doctor if she didn’t refer me to a gynaecologist again I would take further action I was suffering too much , the point is there is always a light at the end of the tunnel you just need to be patient and firm to get answers because your body is telling you something xxxz

zsmith76 profile image
zsmith76 in reply toFooofs91

Thank you so much. I know I was really surprised that he made me me, a grown woman, feel like crying. Wow so you had pain after periods? What kind of pain was it? With me it's either the day or day after the period and it comes on as a solid wall of pain ie no contractions like normal period pains. On top of that I have clots pouring out if me at times that I have wondered if I was actually miscarrying (I wasn't). Not sure what I have but feel it a) isn't normal and b) isn't something I should have to live with without any investigation. Thank you!

Fooofs91 profile image
Fooofs91 in reply tozsmith76

It’s okay my love it really anger me when I hear people going through stuff like this it’s really selfish and unfair coming from medical professionals , with me Hun my pain was straight after my period never in my period without any further blood, I was told by the specialist that this is becuase with endometriosis the blood that is trapped around the pelvis causes inflammation which leads to the pain becuase obviously there is no way for the blood to come out of the body well the trapped blood anyway , my pain is like acid leaking inside me with extreme pressure almost like someone has tightened my pelvis with a vice . I think you deserve to see a specialist for a lap, even if it’s just to clear your mind they can have a look inside and make sure everything is okay please do not worry you will have answers soon praying it’s nothing serious xxxx

MMich15 profile image
MMich15

Every doctor I have seen says "painful and heavy periods are normal" - no they aren't! Do not let anyone make you feel like you're overreacting. I'm not surprised you felt belittled and unable to speak up for yourself, besides the (lack of) empathy and treatment you got its also draining having to go through all this pain. However, you have to be strong and speak up with GPs and with the health care system in general, shockingly even in that scenario only you have your best interest at heart.

It's good that he's referred you but I would make an appointment with the female GP you saw initially, say the results all came back negative or inconclusive but the symptoms have worsened. Just make sure the other GP has actually sent the referral (you'll be surprised how many times these referrals get "lost" in cyber space") and mention that the symptoms are very in line with endometriosis. At this stage, if it is related, best that referral goes to a BSGE clinic than a general gynae.

Good luck and I hope things improve soon x

zsmith76 profile image
zsmith76 in reply toMMich15

Thank you so much for reply. In hindsight I feel like I was penalised for being open and unemotional when I went through it all with him. My first instinct was that I was telling something very personal (talking about blood clots and pain) with a man too young to have any life experience but then I didn't want to judge someone who is a qualified doctor so I told him everything.

Thats a good idea to see the original doctor, she at least seemed to take a more practical approach. I'll see what the practice manager says in response to my complaint too.

Thank you again

MMich15 profile image
MMich15 in reply tozsmith76

I completely know how you feel, sometimes it's like you can't win: either you go in very practical state the facts, or you're so run down you come across as overly emotional and "overreacting" - the truth is he probably couldn't sympathise - like you say he was a young doctor and endometriosis in general is still not taken seriously. Push the other GP to take it seriously, if she did at first she should still now as the symptoms are still there but the cause still unknown. My honest recommendation, be brutally honest about how much this affecting your life - when quality of life is at stake no one should leave the doctors office without action being taken. Best of luck x

SEB88 profile image
SEB88

Hi, all i can say is wow what an inconsiderate ****. If you feel up to it i would complain to the practice manager abiut him, at it is unprofessional. I changed dr within a department because i didnt like one.

Your pain could be adeno, i would see another gp taking the NICE guidelines and the ESHRE documents with you. Get a referral, whilst it may not be a fast track at least you will be in the system. X

Ugne profile image
Ugne

Hi zsmith76,

I can totally relate what you had to go through- i do hope your complaint will be taken as a good lesson for them to be more professional and understanding.

Years ago I was told by a young doctor that it may not be endo, that it may be a STD, some even asked me, how did i catch endo, which tells a lot about how not knowledgeable some medical communities can be. Regarding your experience with a young doctor- his passive aggressive behavior was probably a reflection of his own insecurities, lack of expertise, experience, etc. Sadly human ego sometimes gets in the way. You can always demand to be seen by another specialist, ideally BSGE accredited bsge.org.uk/centre/

What endo journey taught me personally is that no one cares about my body as much as i do, so i don't have any expectations anymore. I make sure i research my rights and what choices i have legally. Being an immigrant, i've even been told that this disease is typical among Eastern Europeans, no one gave me statistics to prove it when challenged.

My last resort if no one listens to me, is to say that i'll report them to one of the national newspapers, it always works.

zsmith76 profile image
zsmith76 in reply toUgne

Thank you for your insightful reply :)

Aone3443 profile image
Aone3443

I had a similar problem, firstly I swapped doctors as my doctors before misdiagnosed me for 8 years (17-25) it seems if you are young they play the you'll grow out of it card a lot also.

I went to a new doctor who was a gp he gave me every test (hormones, sugar etc etc you name it I got it) I thought I was on to a winner, so he referred me to a female gyne and she turned around and told me if it was bearable I should just live with it.

I cried and she said she had referred me to a hospital for a laporoscopy, but when it had been a few months and It was getting to the point that walking was painful I rang back up to find out she hadn't actually referred me to anyone and she didn't work there anymore.

Luckily I had another doctor apologise so much once I'd explained what had happened and I was referred to a hospital for a laporoscopy.

I was asked to change my pill (even though my pill is the best one for endo) but I just had to be very stubborn and tell them I can not live with this anymore.

Have you tried swapping doctors? Or maybe pay for a private consultation? Or ask for a female doctor?

I'm so sorry you have to deal with horrible doctors! With everything you are going through you'd at least think you could rely on a doctor :( they made me think I was making the pain up for a while.

I hope you find some comfort soon x

zsmith76 profile image
zsmith76 in reply toAone3443

Thank you so much. Sounds like you have been through the mill as others on here have been. I've complained to the practice manager and will follow up to make sure he has referred me on!

chihira profile image
chihira

I had a bad experience with a female doctor actually! When i asked whether it could be endo she asked me if anyone in my family has it. I said they have not been diagnosed so referred me to have an ultrasound and concluded (after it was clear) that I had overactive ovaries. I had my other half with me who tried to reason with her to give me a referral and she just said no. After I bursted into tears she offered me tissues and some antidepressants. I then booked to see a male doctor and he gave me a referral! Long story short, i am now on a waiting list for my 2nd lap to cut out tricky bits by an approved specialist. Just don’t stop and know your rights! Look for the approved hospitals and specialists. You have a right to be treated in any nhs hospital. Stay strong xxx

zsmith76 profile image
zsmith76 in reply tochihira

Thanks for sharing your story. I'm not surprised about a bad experience with a woman, I don't think it's particularly gender specific, just disinterest in the medical profession in general!

zsmith76 profile image
zsmith76

Just thought I would reply to my own post to give an update for anyone experiencing similar.

After the rubbish young man doctor referred me I had an appointment a few months later. Started explaining my situation and symptoms to the consultant who said 'you're here, you don't need to explain it to me'. He said there are 2 options - ablation or hysterectomy which would involve early menopause. I chose ablation.

In had the ablation in the autumn of 2018. It was very painful (I declined the use of gas and air - take it!) and had severe pain after so make sure you get some serious pain meds if you do the same. BUT the after effects have been seriously life changing!

After the procedure I had light bloody watery discharge for a few months which got less and less. Now, over a year later I have period pains (enough to require ibuprofen) but no period bleeding at all. No clots, nothing. The change to my quality of life is remarkable!

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