Even more fed up..

[MiaW1]

I wrote a post on here a few days ago about my ongoing diagnosis - I was told IBS but after seeing people's experiences on here and with similar symptoms I thought I would go back to my GP for advice on endometriosis and push for this diagnosis. After my appointment today,I wish I never went as it has left me feel even more upset and fed up. After telling her my tests for IBD are clear and I believe it's not IBS, she has told me she "cannot wave a magic wand" and after telling her I haven't been eating and my weight has dropped she just simply said "you can live without food for weeks,just drink smoothies." Is that really the answer when I am just only 43kg at 19 years of age - I'm worried my weight is going to get seriously low if this continues. She has requested I have a pelvic ultrasound yet I have already had one of these just a few months ago which came back clear.

I asked her about endo however, she has told me that because I am on the Depo Provera injection it is unlikely that I have this because I do not have a period - that was the end of that conversation. I'm really at a loss as to what to do, especially if this other ultrasound comes back clear. I feel like no one is taking me seriously and not understanding how much pain I am in.

[Stefk16]

Hello, sorry to hear what you’re going through. I was on the provera depo injection for a couple of years BEFORE I was diagnosed with endo. My advice is, as hard as it is, go back to see another gp!!! I agree about what you have said about your ultrasound, I had several and nothing ever showed on them. As for your weight, again I wouldn’t listen to her! Can you work out how much you’ve lost and over what period of time? Please do not feel bad about going back again and again until someone listens, that’s the most important thing I’ve learnt over my 16 years with endo. Hope they listen to you and please remember you are not alone! 😊 xx

[MiaW1 in reply to Stefk16]

Thankyou so much for your response. That's so interesting. I thought seeing a female GP would have been better to relate to her about endo but it was like she wasn't interested at all 😞and because I keep going back it's like they are annoyed about it because there's nothing they can do apparently until I have yet another scan! So at the beginning of March this year I was 46kg and was weighed beginning of May in which I was 43kg so around 5 pounds in 2 months. I know it's not massive but it's a lot for me because where I was so tiny anyway I now feel even weaker. Thankyou so much 😊xx

[Stefk16 in reply to MiaW1]

No worries at all 😊 I’ve had a very similar situation, even had one female dr telling me it was all in my head!! You are well within your rights to ask for a second opinion, if she refuses or does not do a referral you need to ask her reasons for this. Sometimes certain gp’s do specialise in gynae problems so it might be worth calling them and asking if they have one. In terms of your weight has your diet changed or anything? I can’t believe what she said about living without food, that simply isn’t true (and I work with young people with eating disorders!!!) if you do have endo you need all the nutrients you can get to help your body function! Xx

[MiaW1 in reply to Stefk16]

It's just so terrible and frustrating and makes you feel like you're making it up! I think now I'm going to go to the Spire to see a private specialist in gynaecology. I haven't really been eating much - have little appetite and get full really quickly so have been eating less. Thankyou for your advice xxx

[Jaas1]

Firstly i would report her. That is unacceptable and unprofessional. They have a duty of care not to put people down. Second of all i feel your pain. I recently lost 1 stone in 1 month due to being under tremendous stress. I was bleeding when i shouldnt be, visiting the toilet 5 times a day and in a lot of pain. I can not emphasise enough how much stress plays a huge part in this illness and makes it 10 times worse so try to stay clear minded. Thirdly i visit a sports massage therapist who uses a ultrasound machine on me which reaches my tissues deeper than massaging it and it helps so much with my pain. Using this and decreasing my stress and eating home cooked foods (nothing in particular just home cooked) has improved my health. Everyone is different i am just telling u what has worked for me. I hope this helps and dont be afraid to ask anything. Forget smoothies, eat to your hearts content and get better!!! x

[MiaW1 in reply to Jaas1]

Yes I felt so intimidated and just completely broke down when I left. Exactly - even the diagnosis is so stressful. So sorry to hear about your stress as well. Thankyou so much for your advice and good idea about the sports therapist - I may look into this. Thankyou, I will try and eat little and often!! Such a vicious cycle when you feel sick and loss of appetite, I don't even fancy a dominoes or some fast food!! So unlike me xx

[Jaas1 in reply to MiaW1]

Just take baby steps like homemade soup with a roll of bread, i was the same but i soon built it up and started eating more to the point where im now en route to kfc! Lol take it easy youll get there x

[MiaW1 in reply to Jaas1]

Good idea,thankyou so much xx

[C2691]

My doctor also said the exact words “I don’t have a magic wand “ and I felt really stupid. I’ve been told my issues are probably IBS but I don’t believe they are. I’ve also had endo ruled out. I feel like they’ve given up now. They can’t find what’s wrong with me and why I’m in pain every day. 🤷🏼‍♀️I just know it’s not normal to be 26 and struggling every day. Hope you get some answers soon, you’re definitely not on your own 😒

[MiaW1 in reply to C2691]

It does make you feel so unbelievably stupid and just so terrible how you are disregarded. No me neither. This happened suddenly one day in October - my pain come on suddenly and ever since then this pain/tenderness has never gone. I just don't think IBS can cause that. Have you had a laparoscopy? Hope you get some answers also, thankyou xx

[C2691 in reply to MiaW1]

Yeah I had my laparoscopy in December. They removed a cyst, took biopsy’s and discharged me from gynaecology and said to investigate IBS. Even though I bled continually for 9 months straight last year and have constant pain but what else can I do 🤷🏼‍♀️. I always come out of my GP appointments in tears cause I’m at such a loss at this point in knowing where to go from here or trying to accept that this is just how it is for me. 😒they’ve tried to make me have provera but I react horribly to any pill so I can’t bring myself to take them. I’m guessing you have yet to have laparoscopy? X

[MiaW1 in reply to C2691]

Sometimes I feel like they just cast you off with IBS. I was in A&E with the pain a few weeks ago and my discharge notes said "functional abdominal pain" - no tests were done at all. They also said 'stresses from uni'. Which is a complete assumption. All I said was I was currently studying at uni however, I have finished my second year already! I feel for you - being in the same boat I know how frustrating it is and getting no where. No I have not had a laparoscopy yet xx

[ThaliaThalia]

I’d switch GP. This one sounds awful!

I’ve heard some terrible comments from gynaes over the years. Some of them are utterly useless when it comes to endo and cysts.

Don’t be fobbed off with the IBS crap they spin. If your instinct is that this is endo, please trust it. You know your body. My first scan didn’t show endo but it was diagnosed during laparoscopy a few months later.

You might also like to try the endometriosis diet. It really made a difference for me.

[MiaW1 in reply to ThaliaThalia]

I know. I hope to keep pushing. I know my body better than anyone and I know how much pain I'm in. I shall have a look in to the endometriosis diet. Can I find this online? Thankyou for your reply x

[RicEndoUK in reply to MiaW1]

HI MiaW1,

I'm really sorry to hear you are having such a bad experience with healthcare professionals. As the ladies on here have said, please keep pushing to get heard and to get the treatment you need no matter how disheartening it is at the moment.

There has been quite a lot of research into diet and endometriosis, which suggests that avoiding certain foods and eating more of others, may stop endometriosis from developing and /or reduce symptoms – including pain. We recommend the book ‘Endometriosis – A key to healing through nutrition’ by Dian Shepperson Mills and Michael Vernon, which is available on Amazon.

Hope this helps and take care!

RicEndoUK

Volunteer Moderator

[MiaW1 in reply to RicEndoUK]

I am only new to this group but the support has been amazing from everyone and I feel empowered to push through this and really strive to emphasise what I'm going through to professionals. I shall have a look on Amazon now at the book - thankyou so much for this suggestion and thankyou for your reply

[ThaliaThalia in reply to MiaW1]

The Endo-Resolved website offers free endo diet advice, too. I think that’s where I first heard about the diet. I’ve heard of the recommended book - it’s got a good reputation. The free advice should work, too, just in case anyone is following this thread who is on a tight budget.

[MiaW1 in reply to ThaliaThalia]

I shall look that up too - thankyou so much x

[RhiannonT]

I'm so sorry you've had such a bad experience. I've been fobbed off with IBS for years, which I think it's definitely not. I've got all the endometriosis symptoms. I went to a female GP who, luckily for me has been great. She suspected endo straight away so has referred me to a gynecologist. I've been on depo injection for about 4 years now and have no period and my GP STILL suspects endometriosis. So yes, it's possible to still have endo without a period- the injection will just be doing its best to keep it at bay (not working anymore for me lol). Please see a new GP, xx

[MiaW1 in reply to RhiannonT]

Thankyou so much for your advice. I had read that it was still possible to have endo even whilst on the injection hence why I mentioned it to her and I felt so shut down when I mentioned it! It's just another set back for me but I'm going to keep pursuing this. Thankyou. I will most certainly see a new GP! Xx

[ew74]

I too have been fobbed off with IBS for 16 years....yes 16 years and am finally having a laparoscopy for investigation (and if needed treatment) in a few weeks. I have also been tested for Crohns, IBD, food intolerances, had my gall bladder removed, you name it I have been tested for it, and none of it showed anything or improved the pain. I went on the depo injection myself about 7 years ago in the hope that it would stop my periods as I suffered so badly with them and I was getting no where with the Drs. I still have flare ups on it so the GP should not be saying that being on depo means you can not have endo! I hope that you get somewhere with it all soon. I found seeing a locum gp was the answer to getting my referral.

[MiaW1 in reply to ew74]

16 years is crazy and I'm so sorry to hear you were fobbed off for so long. I really have lost faith in some GPs. She told me there was nothing she could do yet as a primary care service they are the ones who should help start the ball rolling! I think she is still trying to tell me I have IBS because she prescribed me membeverine, even though I told her buscopan didn't work. I can't believe many people still have endo on the depo and she completely said it's not possible. I'm shocked! Thankyou for your reply and good luck with your laparoscopy x