Has anyone else had this happen? - Endometriosis UK

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Has anyone else had this happen?

LeyaC profile image
5 Replies

Basically I have been experiencing symptoms of endo for 6 years now (I'm 17) and I have been to 2 gynae's to try and sort things out. I have been diagnosed but the first gynae didn't want to treat me so I went to another hospital and the lady there told me I needed to relax and the pain will go away, she said I didn't have endo (even though this was the first time we met and the only thing she saw was my face, no examination) She told me that if I took amitriptyline that it would stop the pain and calm the anxiety about it. I told her I don't have any anxiety, I just don't want to be in pain and I want a good painkiller and also to know what my chances are to have children but neither of these were seen to.

I have been feeling really depressed since taking these tablets and the pain hasn't gone or even eased and wondered why so I decided to look at the side effects and saw something about "If you start feeling suicidal, let your GP know immediately" I thought, hang on a minute, suicidal??? So i looked at the uses for amitripyline and it is used for depression! I know some of you have probably been told its an anti-depressant that is also used for pain but the fact my gynae, a professional told me that it was to take away the pain and didn't tell me it was an anti-depressant has infuriated me.

I know it can be used for pain relief but because she thought i was imagining it makes me think it wasn't the pain part she gave it me for. Some of you may think I'm over reacting but I have had alot of people doubt me when I know deep down, there was something wrong and I was right. It's just angered me that she thought it was all make believe for me. Sorry for the ramble but I just needed to vent.

Thanks in advance for any replies that are helpful.

Leya :)

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LeyaC
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missteal profile image
missteal

Hello and welcome to the site. It sounds to me like you need to have a laparoscopy to diagnose any problem "down there". A lot of gyneas don't take young people seriously. I first went to the dr abut my pain when I was 10 (when I started my periods), I wasn't diagnosed with endo until I was 26! There are many gynea conditions out there that cause similar symptoms so I wouldn't assume anything until they've had a look inside hun.

Amitriptyline is indeed an anti-depressant. However, it is very rarely used for that any more as it has serious side effects. The dosage you get for pain relief is much, much lower than if you were having it for depression. It is a very useful pain treatment for girls with gynea issues. Unfortunately it didn't work for me but I have heard it working for a lot of women. Your gynea wouldn't have said it was an anti-depressant because of the dosage you have been given, it's for chronic pain at the low dose.

If I were you I'd keep a pan diary along with a menstrual cycle diary for a couple of months and then go back to your gp. Then they can see just how much pain you're in and that it does relate to your cycle. I've had 3 drs tell me my pain is in my head and sent me to counselling and cognitive behaviour therapy.....funnily enough therapy didn't cure my pain. Keep pushing for a diagnostic laparoscopy hun, that's the only way theyll really know the pain isn't in your head!!

xxx

LeyaC profile image
LeyaC

I've had a lap, sorry to confuse! and I was given 25mg of amitiptyline. Even though I had the lap to confirm the second lady said there wasn't enough evidence of endo for it to be that, even though she didn't check any notes or do any investigations.

Impatient profile image
Impatient

If you have had a lap which did diagnose endo was present, and you don't have any joy from the gynae team (not much surprise there) then two options.

first is vist your GP, he/she should have had the results of the lap op on your records by now, and should be able to prescribe stronger pain meds for you. You do need them, but you also need to be careful with them because they do also have side effects, like constipation, dizziness, exhaustion and so on.

Over the counter pain killers are just not good enough for combatting endo pain. The other really useful advice is to keep on top of the pain killers, keep them topped up, do not let them run out and suffer increasing pain before taking the next one, it won't be nearly as effective as taking one before the previous dose has run out.

Second is you need to switch to an endo specialist gynaecologist.Not just a fertility gynaecologist. Endo specialists are much more experienced and more likely to take your situation seriously. General gynaecologists who do not specialise are often ill trained to appreciate the needs of women with endo.

There are plenty of other anti-depressants to try, please don't think that because you are having a hard time on one sort that a different sort would not work. Feeling depressed is VERY common after any surgery or trauma to the body, (like a lap op) so it need not be directly caused by the drug you are on now or just by having endo. Please visit your regular doctor about this, book a double appointment as there is much to discuss, certainly more than you can squish in to a quick 5-10 minute appointment.

Hugs to you. your moods will improve, you just need to give yourself break, and proper meds that suit you will help you to recover, and don't be scared to try some different ones.

LeyaC profile image
LeyaC

My go won't give me any stronger than 2x 500mg ibuprofen! Trust me I've tried to get more but they don't believe the pain is strong enough to have anything else, besides, the only thing that works properly for the pain is entonox and I know for certain you can't get that from the doctors. As for the Endo specialist, trust me I've tried again with that! I refuse to see men for personal reasons and nothing and no one will make me see a male but when I did find someone that would help they told me just before I got the appointment that I had to be over 18 for them to treat me. I have found a hospital in Oxford that might help me but that's not even an Endo specialist I don't think. If you know of any female Endo specialists then that would really help! And also if you know of anyway I might be able to calm the pain down. I work in a nursery and the pain stops me from moving which isn't impressing my employer as everytime she walks in, I'm sat down with the kids. I haven't told her yet as I don't know how to bring it up and what to say as she's making people redundant and I don't want to lose my job over it.

Sorry for the ramble,

Thanks for the replies!

Leya :) xxx

missee profile image
missee

hey....blesss you...you sound like a new endo sufferer....everyone i think goes through wat u are....i spent a good fewyrs telling my old gp i wasnt feeling right...and like you was told iburofen and another personal favourite of mine "you have ibs" and i changed docs...now my gp is my best freind!!!lol lucky for me he was trained as gynae...in the space of 2weeks i had smears which showed edhesions on my cervix...had them lazered then had a scan showed a dermoid cyct with thyroid in...by the time they got it it had destroyed my ovary and fellopian,,,so lost them....at the same time had a lot of endo removed...it was always maybe thought it was there but till they saw in side..i was then diagnosed with it....so now im kinda past your level now but i stilll feel robbed...i cant work,go shopping.ect..that part im struggling with still...and trying to find a pain level that wont drop me to my knees...maybe if this gp int listening its time to find someone who will....good luck...xxxxx

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