Sorry this is going to be long I literally have had enough 😔I had my next gynaecologist appointment today and have come away thinking what's the point anymore 😔
I was called into the room by a locum gynaecologist who I had never seen before she couldn't even get my name right and kept calling me by my middle name including writing my middle name on all my notes!
I had to explain everything to her right back to when I was 11 (so 14 years worth of stuff) she didn't understand why I couldn't remember some things!! I don't know why she couldn't look at my notes.
I told her since re starting the depo 11 weeks ago the bleeding has stopped however the pain is 10x worse I keep getting new symptoms regularly including an area of my stomach which goes bright red and patchy/burning in agony.
She asked if she could do an examination- she examined my tummy area and then called for a nurse so she could carry out an internal she had to try and do this twice due to the pain. When she was carrying out the internal I was wincing in pain and close to tears, my mum and the nurse could see how much pain I was in. She kept telling me it wasn't pain and it was pressure- I couldn't get her to understand that I was in agony.
The doctor went off to speak to an on call consultant she then returned and basically said to me I have to carry on with the injection for the rest of my life carry on with the regular pain medication deal with the pain, or in her words regularly have a baby to help with the pain (bear in mind I don't have any children at present!) She has said they won't see me again if I need to be seen I have to go to my Gp to be referred again, my mum knew the answer but asked the question anyway to see what the doctor said 'endometriosis is for life isn't it?' To which the doctor replied 'yes it's a severe chronic condition that needs monitoring' so I rest my case why have they said they won't see me again I can't rely on pain medication everyday for the rest of my life I'm no doctor but surely it's not doing my insides any good.
I don't know where to turn from here looking for some advice/answers/support I am about ready to give up
Ive added a photo of my tummy and the painful burning symptoms I now get
Joely xx
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Joely21
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Hun I'm so sorry you've had such an awful consult. I would get a referral to a different gyne. You really shouldn't have to carry on suffering like this. It's not right. I'm surprised you didn't slap her when she said it's just pressure not pain.
I just feel hopeless I really can't be bothered with it anymore. She then said that I could be seen by pain management but the waiting list is incredibly long!! I wanted to I know what's pain!! I was crying with how painful it was xx
I'm so sorry you've had to experience this. I would really push for a referral to see a different gyne. Could you see a specialist? It sounds like this one didn't have a clue! I hate it when people say things like 'it's not pain it's this' when they forget we know our own bodies and symptoms. Big hugs xx
I'm going to try for another gynaecologist it's so hard my consultant has walked out (the hospital have failed to tell me this I just know someone who works there) so I currently have no one I can turn to 😔 That's exactly my point I know my body and the fact I was crying because she was hurting my I know it's not pressure xx
My gyne did something called pain mapping to distinguish between pressure and then areas that I had pain in, has yours done this? Was unpleasant but helped them to identify where to look for the endo x
I'm not sure, it's the first thing he did for me when I said using a speculum (sorry if I've spelt it wrong) during my last exam caused a lot of pain, so did this to suss out where the worst pain was coming from. He then wrote up where I said it hurt the most. Involved a lot of internal/external pressure so not fun and not something I've heard of much but I guess it could be helpful?
What a disgrace. So sorry you had such a dreadful experience. How can these heartless,unprofessional individuals be allowed to practise? You don't need to put up with this pain,discomfort etc for the rest of your life-go privately if you can and see a specialist. If going private not an option , go back to your gp or even another gp and demand referral to a specialist and mention how dissatisfied you are about the gynae appointment and how you need immediate and proper attention from a specialist. So many poor women are being dismissed and not listened to (myself included) and it shouldn't be tolerated. Hope you get the help you need asap from someone very understanding. Take care and don't give up!xo
I couldn't believe the lack of care I was shown I really went today feel optimistic and came away wondering why I ever bothered in the first place. I feel like I should just shut up and get on with the pain everyday 😔
Thank you so much for your message it means a lot I will be going back to my Gp and insisting on a referral again xxx
Just saw your post and wanted to send you some support hun.
Please don't give up...ever...
I have been in the same position I don't know how many times and if saddens me beyond words that this "advice" is still being told to ladies with endo.
There is a way through this hun. I'm also a nurse and had endo from age 13 my consultant said I had one of the worst cases she'd ever seen when she first operated on me...but she did help me and there will be a consultant that can help you. I'm so glad you have a supportive mum who can help you voice your concerns where would we be without our mums? I'm a lot older now approaching menopause and my pelvic pain seems to be easing although I have other health probs now , please forgive the woolly brain I have.
I would start by looking at specialist centres for endo or look for a consultant who specialises in treating endo you can ask for a second opinion and meanwhile keep a diary of symptoms and pain.
Have you got a good gp? Will he/she prescribe patches called versatis? They are very good used for shingles pain originally but found to be good for endo pain they have 5% lidocaine in them. Worth asking yr gp or next consultant if they will try you on them.
There is a v good book called nutrition and Endometriosis by Dian Shepperson Mills worth reading it has tons of info as well as nutritional advice.
Have you tried other medication or had surgery to remove the endo? I had zoladex and excision surgery after a lot of diagnostic laparoscopies!
I'm so sorry you had such a painful examination and difficult consultation some drs really do lack the necessary communication skills they need. I too have come out of appointments feeling utterly deflated after waiting so long to be seen and pinning all hopes on the appointment for the help I needed. But the help is gradually getting better and please look around for a good specialist gynae consultant who will be able to give you the care you need.
Thank you so much for your message and for your support it means a lot in my darkest hour.
I know there is someone out there that will help me and listen to me I am just struggling to find her every time I go I see a different person who doesn't understand me and doesn't understand my situation.
My Gp is brilliant it's just so hard to get an appointment with them. I will definitely ask to see if I can have hem I am willing to try anything I don't mean to go on but I can't carry on like this.
I had diagnostic laparoscopy two years ago now and I take regular everyday paracetamol buscopan and naproxen and rely on a tens machine every day.
I will certianly look into that book I'm willing to try anything. I am also fed up at every appointment being told to have a baby I currently have no children and don't feel like my health is at a stable stage to have a child it's ok for them to tell me this but a child is for life not just to reduce pain!
I am suffering so much today due to the pain she put me through and then told me it was pressure and not pain I know my own body .
Is this consultant with a BSGE centre? If not, I would ask your GP to refer you to one.
Also, I know you area exhausted from having to fight the medical professionals, but have a look at PALS at the hospital you were seen at and construct a complaint for them to assist you x
This consultant is just at my local hospital. How do I go about a referral to a BSGE centre? Sorry for the questions, I will definitely be making a complaint xx
I got this to a couple of years ago and I've suffered since I was 11 to! I have just gone back to my doctors and he was unhappy with what the consultant said to me. You need to ask to be referred to someone else because that answer is not good enough. I really hope you get the answers you need . Also sounds like you could be allergic to the depo?
I'm sorry to hear you had to go through the same I hope you get the answered your looking for. I have had my next depo today so will see how it goes see if anything else occurs xx
How awful. We wait such a long time, in agony, for these appointments and to be treated dismissively at this stage is frankly appalling. You needed a solution. I'm sorry you were treated this way.
I went to A&E several times and the first gynae said my symptoms couldn't be endometriosis because I wouldn't be in so much pain. He also disregarded my G.P.'s suggestion that I had a rupturing cyst because he said he would have felt it during the physical exam. He sent me home, my cyst ruptured and I ended up back in hospital, in even more pain, for five days. The scan confirmed the rupture and a laparoscopy confirmed the endo.
Please be fobbed off by their incompetence. You need to fight, like I did. Insist on a referral to an endo specialist if you suspect it's endometriosis. If you're in agony, get to A&E.
I got to the point where I was sobbing all the time. It was terrible so I truly empathise with you.
I would also write an official complaint against the gynae so that it's on her record. She can't treat anyone else like that.
Lots of love to you. We're here to support you and we understand what you're going through. x
Thank you so much for your reply it really does mean a lot to me.
I am so sorry to hear you have also been suffering.
I know what you mean I feel defeated at the minute and at the stage where I think why what's the point why am I bothering I know in a few weeks I will hopefully be feeling optimistic again.
I plan to write a compliant just never know where to start I've wrote a complaint before and it's never got me anywhere xx
That's bloody awful. Definitely see your gp again and request a referral to a bsge centre. If you google Endometriosis bsge centre you'll find a list. I think there's one on Endo UK too. Def make a complaint against the gynaecologist. Regarding the pain during examination, I had that so many times. I was 18 when diagnosed and I'm 40 now. With age and experience I am far more sure of myself now - if any examination hurts me I tell them they have to stop IMMEDIATELY. I know if it's causing me pain rather than pressure not them! I had so much crap with gynos and this when I was young. One even said as I was in tears and fearful during an examination I must have been sexually abused at some point so requested my gp sent me to a psychiatrist! I went once before my mum told them this is not happening again. It beggars belief that someone who is a dealing with Endo as their profession has no understanding of the amount of pain it causes and of course it's then agonising to have internal exams. I know it's so tough to keep fighting but please do. You have the support of everyone here and it sounds like you have a supportive mum. Take strength from that. Every time I have a negative appointment re Endo I feel beaten down and it takes me a few months to tackle it again so I do understand. We just have to support each other to keep fighting. It's disgraceful how you've been treated and you definitely need to see a different specialist. Take care. Xx
I'll have a look for a bsge centre and see what happened.
It's just so demoralising when you know that your suffering and having to go through this battle every single day and they try and make out that none of what your saying is true.
I wish these nurses/doctors realised themselves how awful it is to have this.
Every day is a battle my job involves working with children and I try my hardest not to let the children see me suffer.
My mum is just incredible she pushes and says the things I forget when I'm caught up in this awful world.
Thank you for your support I feel really alone right now so it means a lot xx
Put in a complaint about the locum and get a referral to another gynaecologist and if it's endometriosis with a chocolate cyst you need a laparoscopy to have it removed trust me there painful especially when mine ruptured. My cysts have always been small and just under the minimal amount to be operated on however there really painful so I was allowed the surgery I've just gone down the medically induced menopause route and if that doesn't work then I'm having a hysterectomy I'll find out if endometriosis had gone in October if it's still there then it's final op time. Good luck x
I just can't get why I am in agony every single day in the evening I sit on the edge of the sofa doubled over in pain holding my stomach. The other night I got up to go to bed and had the worst pain I've ever felt and ended up slumped on the stairs for 30 minutes until I could move.
I'm sorry your having a bad time yourself I am keeping my fingers crossed for you xx
It's normal I used to find sitting on the toilet helped until I was diagnosed with pelvic congestion syndrome aswell as the endometriosis it's double pain I'd say pelvic congestion syndrome could be another possibility but unlikely if you haven't had a child as it's basically varicose veins in your lower abdomen and when your pregnant as you get bigger it stretches the veins allowing later on for blood to pool where they've stretched but pain from that is much worse than the endo pain and at least with endo you get a warning with this u don't, but pain of pcs always gets you of an evening and is made worse my prolonged periods of standing maybe it could be that other than the endo because symptoms for both are very similar but you would need an MRI to diagnose that. x
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From what I've just read from info I was given pelvic congestion syndrome is more common in women who have had children but you can still have it when you haven't your symptoms sound more this than endometriosis look it up and read symptoms and see if matches it's more so you saying evening when you get the pain x
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I could just give up
Can endometriosis be missed during a laparoscopy?
Internal examination 
Gynaecologist refusing to do laparoscopy 
Feeling confused!
