Specialist appt tomorrow: So I have my... - Endometriosis UK

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Specialist appt tomorrow

aaleyah786 profile image
11 Replies

So I have my appointment tomorrow with the endo specialist (yay)

Have wrote a list of my symptoms for him and the tablets my doc has given me.

Any advice for this appt im worried hes going to just dismiss my symptoms and discharge me.

Thanks in advance.x

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aaleyah786 profile image
aaleyah786
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11 Replies
Catness profile image
Catness

Hey :)

I would go in with a clear idea of what you want to come out of the appointment with. If you want to come out of the appointment working towards a laparoscopy and idea of diagnosis then perhaps if appropriate you may need to say that. Your symptoms sound very similar to my initial ones and hopefully your consultant takes it seriously and won’t try and persuade you to have the coil or something similar before a lap.

Best of luck at your appointment xxx

aaleyah786 profile image
aaleyah786 in reply toCatness

Thank you. I think thats my worry is that they are going to fob me off with birth control. I want a lap because ineed to know for certain what is wrong xxx

luthien profile image
luthien

Yay!!

Have you got the list as kind of like a diary? As that helps the specialist to see at what times of your cycle things happen. Include periods etc. Also don't forget other symptoms such as pain during sex and where, even things like upset stomach, bloated, bowel movements, feeling tired / exhausted, as hormones can have an effect on all of those too. It is worth having a pain scale (1 to 5 or something) so that you can grade your pain and he will know what you mean as everyone's pain is different.

I printed out the Consultation Questionnaire from endometriosis-uk.org/public... the official website that links to this forum. That really helped. Also it's worth asking your specialist some questions, it may seem odd but they are useful to determine what sort of methods he chooses; how long have they specialised in gynae - experience level. What is their specific specialism - experience with specific problems and treatments. What treatments does he recommend - gives you an idea of whether you would like his preferred route. How many women has he treated - may be a bit vague but again experience. How often does he see them return - symptom free months on his recommended treatment and whether they come back to him. What's an average course of appointments / treatments look likes with him and the timescales - tells you about care / check ups and aftercare / ongoing treatment. You may not feel comfortable asking any of these, but it would be good to pick a few, after all you are going to be taking his advice so you want to make sure your idea of care aligns with what he offers. I asked all of the above, luckily I have a specialist that's happy to answer all my questions and the care he offers is aligned with what I need and had in mind.

Consider what treatments you would be happy with from what you've read on here. I found in my book on endo it says a good specialist should not consider the pill or hysterectomy as the only two options and should not pressure you for one or the other without first looking at what your symptoms are and investigating further. If they do they are looking for quick fixes to get you out, a good specialist will use all their knowledge to help you work through all the possible treatment options, discussing each one with you. Don't feel like you need to make a decision about any of the things discussed there and then, there will be a lot of information. I went home and thought about my options and then had another appointment once all the results came in (blood tests and ultrasounds) I then decided what I would like; I opted for diagnostic laparoscopy with removal of any endo they found, a hysteroscopy and biopsies of anything unusual, my specialist performed the operation.

If you have a partner it is a good idea to bring them along, not only does it show your united front at the specialist it means you value your partner and want him involved; it may affect your life and he may actually be interested. If you don't have a partner a good friend is okay; another person to listen to what's being said as you may not catch it all and someone to discuss the outcome of the appointment with. My partner comes to all my appointments as he wants to help me manage my endo and wants to be there for me.

The more open and questioning you are the more they'll take notice of you. Remember it's your body, you know what's not right and that's why you're there :)

Hope all goes well xx

aaleyah786 profile image
aaleyah786 in reply toluthien

Thank you so much for your reply. I will write those questions down and ask them.

My mom is coming with me as hubby has to work but I will defo ask as much as I can and see what options he suggests.

From what I have read on him he has quite a lot of experience with endo so keeping an open mind about him.

X

luthien profile image
luthien in reply toaaleyah786

Sounds like you're doing all the right things.

It's good that your mother can come with you. Don't forget though to share everything with your hubby as he's the one whom you'll spend all your time with when deciding what to do next, and he sees you day to day :)

aaleyah786 profile image
aaleyah786 in reply toluthien

Hubby is my rock through all this pain, he helps me the most.

I wish he could take time off to come to the appts with me but its just not possible.

Xx

luthien profile image
luthien in reply toaaleyah786

Aww, my hubby talked to work about my appointments, explained what it could be and what's happening, because it's classed in works view as reproductive and family planning (sort of) they let him work flexi so he can come along. It's worth asking. Or if it's shift based / fixed hours, rearranging your appointments out of hours / just after work, or on days when you're both off.

It's great to have a supportive hubby, sometimes you just don't know how to say thanks!!! :)

aaleyah786 profile image
aaleyah786 in reply toluthien

His work are useless they just about let him take time off for my lap that got cancelled last month.

Plus childcare for my 3 children is a nightmare.

X

luthien profile image
luthien in reply toaaleyah786

Ahh no :(

My hubbys work said he had to take holiday for the lap; it says in the letter that someone needs to be with you for 24 hours after the op due to the anaesthetic, well there's just him here. He now takes those sorts of letters in and talks directly to HR about what he can do so he can be there.

Emma5397 profile image
Emma5397

I saw a specialist last month for the first time, and he was amazing! A lot better than the gynaecologist I saw before. I hope you get the proper help you need! just be completely honest about everything, especially your bads, reading your list is exactly what I have also! Good luck xx

princessk09 profile image
princessk09

The endo specialist I saw was amazing and so much better than general gynaes and gps.

He didn’t say talk anymore birth control to me and straight away suggested a lap. He found tender spots in 3 area which other gynaes hadn’t picked up on.

Only think that annoys me is my gp always goes against the specialist opinion and says he’s lying and that the tenderness is normal 🙄

Good luck at your appointment xx

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