I finally had my first gynae appointment the other day. Been waiting for it since December. I took the advice of everyone on here and wrote down all my symptoms and a timeline of everything that I've experienced for the last couple years. This was especially important for me because I have quite bad anxiety. It's usually okay and I can manage it, but hospitals and doctors make it worse. My blood pressure is usually normal, but whenever they take it at the hospital it's around 110/160! So when I'm that anxious, I get flustered and forget to mention things.
I explained this to the health care assistant, and she was lovely. But when I went in to speak to the gynae doc, I handed this piece of paper to him and explained everything he needed to know was on there, and he just stared at me. Didn't say anything. Didn't take the piece of paper from me. So I held it out for a bit longer, then eventually just put it on his desk and slid it towards him. He never even looked at it. He just asked questions about the problem so I did my best to explain, but I missed out a load of my symptoms, and everything I explained was out of order. Even as I was doing it, I was getting pissed off with myself for not being able to just calm down and explain fully. But I can't help this bloody anxiety I get. He just kept staring at me whenever I was done talking as if I was insane or something. So it really annoyed me that he never even bothered to read a single page of notes I'd typed up for him.
He did an internal exam and took three or four swabs, but because I wasn't expecting that, I completely forgot to ask what they were testing for. I've never had a problem with my smear tests before, but this exam really hurt and caused some bleeding because my muscles apparently contracted and wouldn't let go of the speculum! He basically tugged it out in the end instead of just giving my pelvic muscles a chance to relax. It was awful. He said everything looked normal though.
He then said it's probable that I have endometriosis but that we can't be sure without a laparoscopy (which I knew might be the case from reading everyone's experiences on here). But he said I have three options.
1. Go back on the pill (which my GP said I couldn't have any more because if increased risk of breast cancer, blood clots, etc. and I've been on the pill for too long already) and take it for three months back to back and then three months off. I fail to see how this will help my symptoms since when I originally came off the pill I had the worst period ever. I've skipped the pill-free week in the past too, and I feel horrendously bloated if I do that. Really don't want more hormone treatment anyway.
2. We do nothing and I just carry on with my life. (Is this even safe?! What if it's not endo? What if its something life-threatening?!)
3. We do a laparascopy. He gave me a leaflet for this, but at no point did the leaflet or he mention anything about excision, and I know from you lovely people that if they're going to bother with a laparoscopy, they should be prepared to do any necessary excision at the same time.
Also, he never offered me any kind of scan. Why on earth wouldn't they at least try an MRI first? I know they don't always show up endo, but I know they sometimes do from the stories on here. Why would he offer surgery before a simple scan?
He told me to go home and think about it.
I feel a bit lost. Should I go back and ask for a scan? Or should I ask to be referred to another hospital that has a specialist in endo? There is no specialist at my local hospital, I checked. Honestly, this guy was okay, but he clearly doesn't really understand endo, especially if they're offering laps but not offering excision too. Can I just ask him to refer me to a specialist, or does my GP have to do that?
Any advice would be greatly appreciated! X
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Hello I would personally go for a laparoscopy first to check if I had endometriosis then ask about having an MRI scan as this shows up adenomyosis. This is the order I had things done in and got a diagnosis this way 💛
Like you I don’t react well to the pill or anything with hormones in it, bloats me, weight gain and I feel yuck on them all, tried the implant but that just masked my symptoms for a while.
I think we all forget to say things in appointments so don’t worry, you obviously done a good job as you got offered options. The appointments are so quick & it’s hard to fit everything in within 10-15 minutes.
I’m glad you’ve at least had an appointment now, it means you’re at least in the door/system. Sadly the attitude you experienced from the consultant is all too common. I’ve been going to the hospital for around 20 years on and off now. I still forget to mention things so don’t be too hard on yourself for that. It’s hard when you’re nervous or worried about your health and appointment. I have found I’ve had to try really hard and be quite firm but polite and make my consultant look at the charts I make. He tried to fob it off the other week but I insisted and he then agreed to me having a hysterectomy because of that. Good luck be kind to yourself you will get there.
So sorry you had to go through all of that. I would most definitely request to be transferred to an Endometriosis Specialist. You need to do this properly the first time because it can be mentally draining especially if you are very anxious.
You can always pay for a trans vaginal scan with a Endometriosis specialist sonographer (they are operator dependent) and then take the result and letter to your doctor. This will speed up the process. I wish I had done this. If you are going to have a laparoscopy better to have it done with a endometriosis surgeon so he can remove any disease at the same time. Otherwise you will be doing this twice and it may take longer.
I waited years in the NHS and my symptoms got so bad I lost my job and life. I ended up paying privately. After 5 mins the surgeon did an internal examination and he could feel my organs were stuck together showing a later stage of endometriosis. I don’t think a regular gynaecologist would be able to pick up on this.
Don’t give up. Your experience with that doctor sound awful. You deserve a better experience where you feel safe and understood.
Hi, thanks so much for replying! Yeah, I thought it would be best to ask for a specialist. Good to know about the endo specialist sonographer thing though! I had a trans vaginal ultrasound a few months ago, but it was just a general nurse/radiographer at a local GP surgery, and I was literally in there for less than 3 minutes.
I was really worried that if they just did a lap and didn't do any excision then I'd end up having a second surgery, so thanks for clarifying the best way forward! Sometimes you just need someone to say it to you to confirm you're not going crazy 😂
Hello , you’ve got someone with scant ability to handle your emotional requirements as well as the endo. First , please, please ease up on yourself, having endo will mean that the tissue itself interferes with your hormones such as raising your cortisol levels, possibly reducing other hormones uptake such as thyroid and progesterone. Of itself this will make you more anxious, depressed and all of a jitter. Add that to the normal worries of getting heard and communicating everything you need into this precious slot and most of us turn to jelly. You have nothing to apologise for and you took care to ensure you got your information across. I am only sorry he was unable to include that in the conversation. Poor marks for that 🙄. However, try not to throw out the baby with the bath water here. I had the longest struggle with one seemingly arrogant consultant who was key to care in my area. Whatever I did I didn’t seem to be able to get through. It wasn’t until I basically laid it out that I couldn’t seem to communicate with him and he wasn’t reading the information he needed to for us to make a care pathway worthy of the name that the penny dropped. He suddenly got it and was and has been fabulous ever since. It took so much to get there and yes it shouldn’t have needed it but I also know once he was on board his skill set was what was needed. He was being emotionally dense and that was the issue.
Still your chap has laid out several pathways for you to consider. Here I would question whether he has given you sufficient information so you can make an informed decision or consent - if it were me I’d be a touch confused too with what you have. Next step is to get the necessary details, so you can make an informed choice and then you can hand on heart consent or suggest instead what you’d like instead. So find out who the secretary is , contact them , explain you can’t make the required decision without first having some answers. Let them know the information you received at the appt did not enable you to do that. Make a list of questions to send to them and stress it’s urgent. Ask someone to check them for you as it’s amazing how often stress can make us duck out of being clear enough. Ask the secretary to let you have a time frame when you might be able to speak/ receive written answers from someone to give you the vital details and a maximum wait for that. Let them know you’ll be following up if you’ve not heard back by then.
If you don’t hear back, or don’t get anywhere remind them you need to be able to make informed decisions and can’t without the information. If you don’t hear anything after that take it to PALS. Do use PALS it’s part of how I finally got listened to.
Good luck and please remember you do know best how to make the kindest choices for yourself. You know you and you are worth treasuring.
Thank you so much for replying. You are so kind to say all that! ❤️ I think you're right. I'll contact the secretary with a list of questions and go from there. Thank you!x
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