When I started this blog, I decided that I didn’t want it to be a haven for my trauma and pain. My intention is to make people laugh where I can- I often see the finny side of difficult situations (it’s a blessing and a curse), while also straying true to the reality of my life with endometriosis. That said, this is yet another angry and ranty post, so apologies in advance, but I’ve decided this is an important experience to document. Having FINALLY received a copy of my notes and photographs from my laparoscopy in August, my GP called me in for a meeting to discuss the findings. Having read up on the topic extensively and attended the Endometriosis UK Information Day, my aim for the appointment was to gain a referral to an endometriosis specialist center in London. I’m convinced that my case needs to be reviewed by experts, and a long-term care plan put in place for me.
I think the appointment was the most unsatisfying encounter I’ve had with a healthcare professional in my entire life, and to be honest there have been many dismal instances so that’s really saying something. It started off fairly well, as she printed off and showed me the full results of my surgery which I have been desperate to see for months- I didn’t have a follow up appointment with my consultant after my surgery and have been pretty much left in the dark. However, things went downhill from there pretty quickly. I’m not exaggerating at all when I say it went like this…
Me: To be honest, the diagnosis has also been such a big shock for me, it is hard to take in.
GP: <Looking very puzzled> Um, why?
Me: Well just how bad the damage is, and that I have a chronic illness. It’s pretty upsetting. And it affects my life so much and holds me back, feeling so unwell and in pain all of the tine. And it makes me so worried about my future.
GP: <Rolling eyes> Riiiiight. To be honest you are making too much of a big deal out of this aren’t you? Endo is no big problem.
Me: <Stunned silence>. I’m not ‘making a big deal’ out of it at all. I’ve actually suffered for years hardly complaining at all. But look back through my medical notes, I’ve had constant hospital referrals for years for pain and fatigue.
GP: Well endo shouldn’t make you feel unwell.
Me: Well it does. It’s the chronic fatigue I think and the inflammation it causes.
GP: <Laughing> It doesn’t cause chronic fatigue. It should just cause pain when you’re on your period.
Me: But it doesn’t…I am in agony a lot of the time. Sometimes I can’t breath, and the endo on my diaphragm causes severe burning pain in my back, shoulder and neck. It really affects my work and my PhD- I’ve had to contemplating quitting. It’s been awful.
GP: OK, you just really need to calm down about this, you’ll be fine. It really isn’t a problem.
Me: Well actually, I’ve been doing some reading and speaking with other people who have endo, and I want to be referred to a specialist endometriosis centre in London for a second opinion and to work out a way forward to manage my pain.
GP: I really don’t think that is necessary. You’re just making too big a deal of this.
Me: I’m not. It is a recommendation in best practice guidelines that all diagnosed cases of endo are referred to one of these specialist centers. And it was recommended in the BMJ in March.
GP: The BMJ says a lot of things.
Me: I really think I need this referral.
GP: OK. I will try and get you a referral, but I can’t make any promises. I’m on annual leave from today though so I won’t be able to do it until after Christmas.
Wow. Just wow. I still can’t really believe this happened. Not to be a pessimist, but I am blatantly not getting that referral am I? And if she isn’t even going to pursue it until January then it just means months more of waiting around in pain. I’m so angry about how she completely marginalised my experience and basically kept telling me the problem is in my head. And the worst part is that she had the evidence and photographs right in front of her about how deep and widespread my endometriosis is! I was also really concerned that she lacked basic knowledge about the symptoms of endometriosis, and that she completely overlooked my psychological distress.
Does anyone have any advice on what I should do about this? Shall I wait it our and see if a referral turns up in January? How do you manage with your GP? Your thoughts are much appreciated as ever.
Love,
Claire
xxx
The Endo The World? 
Good for you for sticking to your guns, love!!! I haven’t actually had the “Endo Conversation” with my GP. My gynecologist was my surgeon who found, and he has been a saint! I hope you get that referral sooner rather than later, and continue to press for it! What about seeing your gyno? He/she may be more familiar with Endo and it’s REAL issues. Bastard GP…
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I think things are quite different in France – we do have to be referred to specialists by GP or by any other specialist we can see freely, gynaecologists included. Anyway, I understand your endo is quite massive and you do suffer a lot, so if this is an option, you could try to be referred by your gynaecologist maybe? Can you chose not to see this GP ever again?
Speaking of GP: in France we have to chose a GP, then this GP is our “médecin traitant” and we are not supposed to switch for another GP. I recently moved so I will be able to get a new GP which is fine by me, since my old one, who was otherwise friendly and a good listener, heard me speak for years about terrible bowel movement during my period, weird weight gain, and passing out after sex (I must admit this one DID seem dramatic) without ever suggesting endometriosis. I got tested for diabetes, asked if I was under stress, advised to go on a diet, etc. (I remember her advising a particular brand of frozen vegetables, which is ironic since obviously I am not the kind of person who eats frozen pizza and I practically never buy frozen food). Anyway I am in the process of chosing a new GP. I saw one for the health certificate I needed to enroll the local rowing club, talked to her briefly about endo, my allergies, and rowing, she did seem a good listener, not the kind who has an opinion before you even start speaking. I’ll see her again soon to talk about endo stuff and we’ll see.
I did see a terrible GP though. I recently started a new job, and I had to see a GP for a work certificate. When I told him I had just recently been diagnosed with endo, and before that he had asked my age and whether I had children, he then said “you’d better have children now”. I told him I did not want to have children (btw I feel so, so sorry for endo ladies who want children, and in a way so grateful not to want children) and 2) I virtually have not fallopian tubes left, so having children would not be that simple. He answered “come on, all women want children, that what God created them for, endo is not such a big deal”. Great.
There has been a campaign in France recently (on twitter: #payetonuterus) about how women are often badly treated by some doctors, including gynaecologists. I think it is important, if we have the possibilities, to protest when we are badly treated (unnecessery, painful vaginal examination for instance, with doctors saying “come on, you do not complaint when you have sex” or “how do you want the baby to come out of the vagina if you don’t let a speculum in”) and possibly to make bad treatments public. It is not only the bad diagnoses that are terrible, but also the bad communication, the lack of understanding and compassion.
Anyway. I feel for you: this GP experience really is terrible.
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Thank you for this comment- really interesting stuff and I really appreciate your support 🙂 Seems like GPs can say the strangest things sometimes wherever we are. I just checked out that twitter hashtag and it was great, although it makes me so sad all the crap we women have to wade through to get the basic care to meet our needs. Your GPs reaction to you saying that you don’t want kids almost made me fall of my chair! Anyway, hope you are doing as well as possible.
Claire
x
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Thank you! 🙂 It wasn’t easy- my jaw hit the flaw. Your gynae sounds lovely! Very jealous- I need to find a nice supportive one too. I need to check and see if my GP has made my referral before I start going ninja on people I think, haha! Hope you’re well (as can be)xx
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OMG … I cannot believe your GP was like this. I would have wanted to biatch slap the f*ck out of that woman. VERY VERY insensitive. Not informative. Very dismissive. And to boot, disrespectful. She needs to take that year long leave and pursue another profession … preferably one that doesn’t deal with human interaction.
There is definitely an ART to being a physician and well as science. Perhaps she lacks the art part.
I had my own dealings with a physician recently where I felt like I was on trial to prove myself. My regular Gyn is on medical leave — has been for several months due to his head & neck cancer requiring chemo and radiation after his second surgery. So, in the meantime there are substitutes at this office. The one I saw was not friendly and not someone I’d see on any regular basis.
What happened to actually caring about a patient? This doesn’t mean a doctor has to go nut-shit crazy and agree with everything a patient says, but there’s something called empathy.
Here’s my post about doctors: https://hysterectomy4dysmenorrhea.wordpress.com/2014/11/28/is-there-a-good-doctor-in-the-house/
Anyway, endo is real. Your pain is real. The physical BS you put up with during the month — NOT JUST YOUR PERIOD — is real. I wish for you some solutions, some things that truly work and a caring, considerate, interested, intelligent, empathetic physician in your future! 🙂
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Hi,
Thanks for your lovely and supportive comments- you made me laugh too! It was such a bad experience- I almost walked out I was so angry. I actually think she went home and Googled endo though because she has been much more sympathetic since, and she has referred me to a specialist treatment center which is what I wanted 🙂
I loved your blog post that you linked to, I think this is such an important issue because we put so much faith in our doctors and are so vulnerable when we see them. That grapefruit cartoon made me laugh out loud in our very quiet office!
Anyway, I wish you all good things for the future, and have a lovely Christmas. Do please keep in touch.
Claire
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I sooo can believe that this is what happened to you. One of the GPs, whom I avoid at the moment, told me that low iron wouldn’t make me exhausted, if I’m tired, I should, well, rest a little, and it’ll all be fine. And then when I complained about low mood, they kept asking me if I was depressed. “You tell me!” I thought, “You went to the med school!” I think the severity of the symptoms are constantly underestimated by the doctors. It’s ‘just’ endometriosis, it seems. It’s hard. Take care of yourself. Big hugs.
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Hi,
Thanks for this lovely comment! Yeah it has just been really frustrating trying to get my GP on board with what I’m going through. She did actually refer me to a specialist centre in the end- which is progress, but I can tell she still thinks I’m being a drama queen. I think you are so right about doctors thinking ‘oh it’s just endo’. I was thinking about this earlier in the week, and I just don’t think this type of ‘care’ would be accepted in most other conditions at all! Anyway, I hope you’ve managed to find a more supportive GP at your surgery? Do care care too, and keep in touch.
Claire
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You don’t need to be referred by a GP to see a gyno in Poland and I went private. After 2ndor 3rd appointment he suggested it might be endo and it’s either a pill or maybe I should have a baby- goodbye. I moved to the UK and was keep going to GPs asking for help and saying a gyno suggested it might be endo- everywhere the same reaction:why dont you get a pill? So after trying different pills, implant, injections etc. decided to try and get through to hospital. My GP; Hmm, your symptoms sound like it could be endo, the only way to check is to have a laparoscopy, so I’m gonna put you on the pill.
Me: I’d like to see a gyno about it.
GP: we don’t send every patient with period pains to a gyno.
Me:depressed and crying.
Different GP sent me to a gyno after my smear test came not quite all right – and yet I had to persuade them!
Bunch of useless people.
love, xx
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