I’m back to square one and idk what to do - Endometriosis UK

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I’m back to square one and idk what to do

princessk09 profile image
46 Replies

Sorry if this is a rant but I’m very upset and annoyed at how my gynae appointment just went

The guy basically just told me to lose weight without even measuring my height and weight and said it will decrease my testosterone level which is slight raised. However losing weight won’t stop my agonising period pains.

I was telling him all the pains etc I have but he said no medication as I’ll be on it for life and I mentioned endometriosis and he dismissed it straight away and won’t do any tests or scans on me. However two doctors at my gp practice mentioned endo as a possibility

The gynae was avoiding my questions of painful sex and said use lube etc even though I told him I’ve tried it and doesn’t help

I’m now back to square one and going doctors on the 31st

Please can someone help or have any advice 💕 I’m so upset rn as I’ve suffered anorexia in the past and body issues as well

Also as I was leaving the gynae said “In 4 months you’ll be nice and slim when I next see you” I’m already slim ish

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46 Replies

He sounds like an ass. Given your previous anorexia issues I think you would be justified in putting in a complaint. If the anorexia is in your medical records then I think he has been irresponsible in the way he has spoken to you. Hopefully your GP can refer you to another gynae.

princessk09 profile image
princessk09 in reply to Lizzielizzielizzie

Yeah my mum said that as he didn’t even look at my records just the referral letter and thought I was lying about irregular periods as the last 2 months have been regular.

TAnd71 profile image
TAnd71

Ill write to you privately later...but for now I would insist on seeing someone else. Write a letter of complaint when you aren't so emotional and put your focus into finding a good gyny in your area...

Maybe reach out here on the forum if you mentioned which county you are living.

Ive lived in the netherlands for 13 years and my last references and treatment was in maidstone in Kent. I had very good care with the gyny department there....

amelialloyd profile image
amelialloyd

Hello

I completely understand why you feel upset. Your experience sounds horrendous, but please don't be disheartened by his awful attitude.

I went to over 40 different doctors and gynaecologists (I came out of some appointments crying) before I finally found a consultant I could trust. He was an endometriosis specialist and understood right away.

Unfortunately most gynaecologists just don't have the specialism to recognise and then suggest a method of diagnosis (laparoscopy) and treatment medical or surgical).

You could ask one of the GP's that you spoke to at your practice to refer you to an endometriosis specialist at a BGSE accredited centre.

As for pain relief, I've found it's best to find a GP that you trust that will work with you to find the most effective way to manage your pain. Please do not suffer with the pain in silence.

It is not certain that you'd need pain medication for life- some people's endometriosis actually regresses on its own, or surgical and/ or medical intervention could prevent the need for long term pain relief.

Hope you're okay

Amelia

princessk09 profile image
princessk09 in reply to amelialloyd

Yeah he just dismissed it straight away and was like your only 18 so the pains are normal and he didn’t suggest anything to help just lose weight even though it won’t help a thing 🤷‍♀️

I want to mention an endo specialist but I don’t even know if it is endo or not, it’s just I have the signs

amelialloyd profile image
amelialloyd in reply to princessk09

Severe pain is definitely not normal, even though we're told again and again it is just part of being a woman. If it stops you doing your daily activities, it is abnormal and warrants further investigation.

Unfortunately the only way to definitively find out if you have endometriosis or not is to have an investigative laparoscopy which I found very scary but it was okay.

At least if you go to a specialist they will likely suggest investigation like scans ect and rule conditions out, if they do not find any other conditions they may then suggest a laparoscopy.

Don't be scared to be your own advocate and clearly express how much pain you're in. After all, you are the only person that actually knows.

Amelia

princessk09 profile image
princessk09 in reply to amelialloyd

Yeah, like it’s not normal for cramps to keep you up all night and heat and painkillers don’t help. And the thought of surgery does scare me but I have a supportive family and boyf who said would come with me and stuff

amelialloyd profile image
amelialloyd in reply to princessk09

Honestly, after all the pain and suffering you're going through at the moment it could actually be a relief to get some answers. It certainly was for me. Post surgery pain for my investigative lap just felt like my usual period pain (which has been terrible but at least you get pain relief post surgery).

princessk09 profile image
princessk09 in reply to amelialloyd

Yeah that’s true as the pain gets worse each month on the first 3 days of my period

Tia1991 profile image
Tia1991

Hi your Dr sounds just like mine told me it was ibs told me to lose weight when I was ideal weight anyway had and still has no idea what I'm going through he put me on the pill then the coil and gave me painkillers just to get rid of me I asked him if he could test me for endo and he said 'You haven't got it' without anything else he fobbed me off again he eventually after about 9 years of suffering referred me to a gynea who discovered after a lap I had endo then when I went to see him after the diagnosis I said I do have endo his words ' well we knew you did' myself and my mum was gobsmacked and couldn't believe he just said that after dismissing it for all them years. Just keep going and complaining to him of see a different dr who you feel comfortable with you need to know if you have it or not.

Doctors have no clue what all us women go through with this monster of a thing (endo).

Hope you get sorted soon.

Take care

Tia

princessk09 profile image
princessk09 in reply to Tia1991

I was so shocked when he dismissed it and didn’t even tell me how much to lose. I’m pretty sure losing sleep over period cramps isn’t fricking normal either

Lulububs profile image
Lulububs in reply to princessk09

Well i know ur pain and i have had pain for 25 years with period, week of pmt then 3 days of pure evil lay on the floor cry and faint pain, i literally sleep for 17 hours on the 4th day because im so emotionally and mentally exhausted.

I had my lap privately 9 weeks ago and no endo, i was totally healthy but they noticed my blood was very thick and i clotted very easy during op, so i was put on tranexamic acid....

2 months later my 3rd period in today i am 60% better!! The pain was the clots giving me false labour pains( my clots were huge) i am lighter as my blood is now lighter not thick and jelly like... and the pain is no where near as bad,i been gardening today!! On my first day of period.... UNHEARD OFF!!!

So please do not think the only answer is endo as there are other reason women can have bad periods... so u need a scan and mayb try transexamic acid for couple of months.

As if it can work

For u without having to have as many tests and ops as me it a big plus!!!!

So chin up and just think u may get better without having a lap or anything horrible done and hope u do not have endo.

The dr was a arse though and he should b giving u things to eliminate what it could be

Tia1991 profile image
Tia1991

No it definitely isn't. To me it sounds like you do have it but i ain't no doctor. I didn't lose weight I dismissed it just like he did with me. You need to stand up to him and let him know its your body and your life. If it was his wife or member of his family that was suffering in all this pain he would make sure it was sorted straight away. Your no different to a member of his family he should do what he needs to ,to help you.

princessk09 profile image
princessk09 in reply to Tia1991

I don’t have heavy periods but the pain is horrendous. But I’ve heard you can have endo and light periods

Lulububs profile image
Lulububs

Wow what a arse!!!! He didnt even suggest a pill or some kind of pain meds? Yeh i understand they dont like to do surgery straight away but theres other things he coulda done ie a scan or pill or transexamic acid!!

So when u go back to ur gp explain what happened they can get u a scan without seeing a gynae. Also u need naproxen and cocodamol and also ask to try transexamic acid .... it works for me once a month so i can still function.

Also insist on seeing someone else and explain about his remarks about ur wait TWICE!! How dare he...

most of all u need a scan and transvaginal

Scan( internal)

princessk09 profile image
princessk09 in reply to Lulububs

I’ve had an ultrasound and it came back normal, I don’t have heavy periods but the pain and other symptoms are horrendous.

I’ve tried transexamic acid and mefenamic acid and they don’t work. Heat doesn’t help or painkillers. No one will do a transvaginal scan on me. Also I’m trying to stay away from the combined pill as I have bad side effects with hormonal treatment

Lulububs profile image
Lulububs in reply to princessk09

U must insist on a internal scan. U can have them

In private scan places to. There one where i live it 55 pounds so there must b one near u if u could afford that?

U shouldnt have to but then it may help coz if they see something as it could b fibroids or ur ovarys or pcos not necessarily endo. At least if they saw something u could take it to ur gp and ask to see another gynae as u have proof of what it could b.

Lulububs profile image
Lulububs in reply to princessk09

How long did u try the transexamic acid for it taken me 3 months for it to make big difference

princessk09 profile image
princessk09 in reply to Lulububs

I tried it for around 2 months but it made me really ill

Lulububs profile image
Lulububs in reply to princessk09

Oh no what a bummer. What did it make u feel like just so i know in case i feel rough

princessk09 profile image
princessk09 in reply to Lulububs

I just felt sick and headaches and it didn’t help my period pains

emmaquinny profile image
emmaquinny

What a fu&@#ing d#ck 😡

I would be asking for a second opinion!

princessk09 profile image
princessk09 in reply to emmaquinny

I know right, I came out crying to my dad and I’m back at the doctors on the 31st so hopefully she gets me a better gynae

emmaquinny profile image
emmaquinny in reply to princessk09

Good luck I’m at the dr tomorrow desperately hoping that they refer me for a lap and not put the coil in, I’m dreading it 🤦🏼‍♀️

princessk09 profile image
princessk09 in reply to emmaquinny

They keep forcing the combined pill on me but I keep refusing as I don’t want to go on it due to side effects and stuff but it makes me feel uncomfortable when they constantly mention it

Lulububs profile image
Lulububs in reply to princessk09

I got to admit i was put on yasmin at 18 and best thing i ever

Did it wasnt till i came off at 35 that i realised i still suffered coz all time i was on then i was brilliant

princessk09 profile image
princessk09 in reply to Lulububs

I think the thought of messing with my hormones again is slightly scaring me as I know I can suffer with bad side effects

emmaquinny profile image
emmaquinny in reply to princessk09

Yeah I gave in and took the mini pill, it made me so depressed I felt suicidal, I’m worried the mirena will do the same as it’s the same drug, albeit a lower dose. It’s awful we have to do things we don’t want to!

princessk09 profile image
princessk09 in reply to emmaquinny

Omg the mini pill completely messed up my body

cmbxm profile image
cmbxm

Mention to your doctor the fact you have had anorexia and you found the fact he asked you to lose weight absolutely appalling so he clearly hasn't read your medical history! And you can ask for you doctor to change your referral to female only consultants if that makes you feel more comfortable, tbh general gynaes are sh*t because if they're not telling you to lose weight they're telling you to get pregnant because that's what every 18 year old wants to hear 🙄🙄🙄 might be worth asking to be referred to a specialist xx

princessk09 profile image
princessk09 in reply to cmbxm

Yeah my doctor knows I had anorexia as it’s on my medical records but the gynae only had my referral letter with a list of symptoms I have made by one the doctors at my practice. He completely dismissed endo being a possibility and just mentioned lose weight in 4 months even tho it won’t fix the problem 🤦‍♀️

cmbxm profile image
cmbxm in reply to princessk09

They will ignore it because it's expensive for the NHS to diagnose! You've just got to fight pal! Been dealing with absolutely some shocking gynaes since I was 16, took me till this June to find one that understands! You've just got to keep fighting and keep saying "is it endometriosis?" Because they eventually won't be able ignore you if you keep mentioning it!! Ask and push for investigative surgery x

princessk09 profile image
princessk09 in reply to cmbxm

Yeah he said he wouldn’t do any scans or exams on me but my parents said they will give my doctors one more chance to find a good gynae otherwise they may go private but then I’m like what if there’s nothing wrong and they’ve paid £300 etc xx

cmbxm profile image
cmbxm in reply to princessk09

I've dm'd you xx

AJJ123 profile image
AJJ123 in reply to princessk09

At least you’d know for sure. No one would think I had pcos to look at me - I only found out via an ultrasound. I had blood tests and everything, testosterone was normal - usually with pcos it’s raised. The scan can highlight a lot, then the decision can be made whether an exploratory lap is required.

princessk09 profile image
princessk09 in reply to AJJ123

Yeah my testosterone is slightly raised but nothing to be concerned about according to my doctor and they ruled out PCOS as my stomach ultrasound was normal but they didn’t do a transvaginal scan

princessk09 profile image
princessk09

Quick update, I’ve managed to get an emergency appointment at my GP so I’ll be complaining about that doctor and wanting to see a specialist xx

AJJ123 profile image
AJJ123 in reply to princessk09

Good, you know your body better than anyone else and if you say somethings not right, they should be looking to see what the problem is. I had no indication of pcos physically - maybe the occasional outbreak and I waxed my top lip but thought that was normal for dark haired women. The only thing I can say for sure is I didn’t have regular periods and I’d miss a few the worst was 3 months and when it came my tummy ached so bad! They need to take you seriously and stop fobbing you off. You’ll get what u need unfortunately u have to go back and forth a lot!

Angelmoomoo profile image
Angelmoomoo

Some gynaecologists are just heartless I’ve found that with the 6 I’ve had the most recent one is meant to be the best in London and told me after a year of being diagnosed that I have a totally different diagnosis. Honestly good caring gynaecologists are like gold dust. It took 6 years for me to wt diagnosed and I’m only 19 xxxx

princessk09 profile image
princessk09 in reply to Angelmoomoo

Yeah I’m 18. I don’t know if it is endo as I have light to normal periods with a lot of clots and pain so bad I can’t walk or sleep etc. And they have become regular the past 2 months. But I do have other signs of endo but it could be anything tbh xxxx

Birdie2011 profile image
Birdie2011

I had the same issue it took me 12 years to get diagnosed. I had a doctor like that, I eventually went in and told him what I wanted and said I wouldn't leave until it happened. 2 months later I got my surgery and my diagnosis of endometriosis. I'm on mefenamic acid which works for me most of the time but I'm now doing the Endo Diet in hope that will help with my pain in the long run. I hope you get some relief but seriously demand what you want I had 3 ultrasounds, internal, bloods etc and everything came back fine, so I told him I want the surgery as I've had all the other tests. I got sick of being nice and patient. Best wishes!

princessk09 profile image
princessk09 in reply to Birdie2011

Yeah I think now I’m a bit worried they may think I’m lying or something because I have normal periods but the pain is horrendous. I’ve tried mefenamic acid but it doesn’t help neither does heat pads.

What kind of symptoms did you have? If you don’t mind me asking xx

Birdie2011 profile image
Birdie2011 in reply to princessk09

No not at all, I have extremely bad pain in my pelvis and legs. Heavy periods, fatigue, extreme tiredness and I get a pinching in my left ovary. But everyone is different some people can have the worst Endo but no pain and don't realise they have it until they have infertility issues. I just got fed up though and said you have done all the test I need the surgery. I was told my whole life 'it's just part of being a girl' so frustration. I would get an appointment back at your gp and tell them you want the lap to see if it's Endo, when I got to the hospital I said I've been here 3 times now I just want the surgery they didn't argue with it and booked me in. Xx

Heloo85 profile image
Heloo85

Your Gynae doesnt suspect endo because of your testosterone levels. Danazol, which is a well known treatment for Endo is a derivative of testostetone. Testosterone blocks estrogen, therefore treats Endo. One thing you could have though is PCOS but theres not really much treatment wise! Your gynea is right to not push for a lap at this point. A lap itself can cauae infection and or adhesions, which can cause infertility/chronic pain. Id take his suggestion. You have an obvious hormone imbalance that needs addressing. Goid luck xx

princessk09 profile image
princessk09 in reply to Heloo85

They have ruled out PCOS as my ovaries came back okay on an ultrasound a few months ago and my doctor just said don’t lose weight xx

princessk09 profile image
princessk09

Back from the doctors and I swear they aren’t taking me serious or something. She said the only options are painkillers and contraceptive pills however these don’t work for me. Now it’s waiting game to see if I can get a second opinion and my doctor said it’s probably just normal period pains and didn’t even look at my diary I made of the pains and symptoms xx

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