Going to Drs advice.: Hi I'm new to this... - Endometriosis UK

Endometriosis UK

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Going to Drs advice.

HettySpaghetti profile image
6 Replies

Hi I'm new to this forum as I have long suspected that my IBS is not the whole picture and that my symptoms are also endometriosis. I am going to the Drs tomorrow and I was wondering what to say so I won't be fobbed off again as I have been for the last 25 years. It's getting to a desperate point for me. I am in pain most of the time, I've put on 2.5 stone, I am exhausted, my marriage and my role as a mother is suffering. Any advice would be welcome. Thank you for reading.

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HettySpaghetti profile image
HettySpaghetti
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6 Replies
ksoponski profile image
ksoponski

Hello :) I was in a similar situation to yourself and was told for 7 years that I had IBS. I questioned it every time I went to the doctors as none of the medication they gave to me for IBS worked. My periods were so painful, I constantly had an upset tummy, I felt tired all of the time. Definitely push for the doctors to take you seriously on this - you know your own body. I was scared when I had a laporoscapy that i'd wake up and they'd tell me they found nothing - but they did and the relief you feel is overwhelming. Push for the doctor to refer you to a specialist gynaecologist, if this is through the NHS you'll have about 3 appointments over a couple of months - keep mentioning that you want the operation as it's the only true way to find out. They will offer this to you if you are adamant. Its sad that you've had to wait so long but good luck and keep going x

The best thing to do is to keep it simple. Tell them your periods are awful, you are concerned you may have endometriosis and you want a referral to a gynaecologist. If they refuse, tell them to put on your notes that they have refused (and their justification for doing so) then make a formal complaint to the practice manager. Hopefully it won't come to this but I think it helps to have a clear idea of what you want out of the appointment.

If you are offered an ultrasound it is worth agreeing to that but be aware that a clear US does not mean that you don't have endo as it can be difficult to see. They may also offer blood tests. Again, it is worth agreeing to these but make sure you get the referral done at the same time. If you are offered the pill or any pain relief, I personally would agree to that too (provided it's not offered instead of a referral) as management of endo is all about pain relief, and as far as I'm concerned, every day counts. Don't wait 6 months to see a gynae before you accept meds if there is something that could help now.

I was also told I had IBS and was told outright that I didn't have the symptoms of endo when I asked. I was unprepared, really, and accepted this answer when in hindsight I should have kicked up more of a fuss. But I didn't know enough, and I trusted the GP to know what he was talking about.

HettySpaghetti profile image
HettySpaghetti

Thanks for the replies. My periods are very heavy and painful. I can't even stand to use tampons anymore. Non of the IBS medicines have ever helped and the various diets including low FODMAP. Having sex is uncomfortable at best and not very often. I'm so bloated and in pain most days that's it's the last thing I want to do anyway. I'm so depressed around my period that I could just let the ground swallow me up and that would be fine with me. Anything to stop feeling like I do. I used to drink every day to help me manage the pain and my feelings but I was getting dependent on it so I haven't touched a drop for 7 months. I miss the numb feeling it gave me. I've not confessed this stuff to anyone before so this is quite weird. I don't know if I'm just clutching at straws looking for answers but I'm sure it's not all IBS. I'm 44 and hope to have many more years in me but not sure if it's living feeling like this everyday.

Lulububs profile image
Lulububs

A women knows there own body , i have had the ibs thing shoved down my throat by every dr i hve seen but my gp who is convinced it is endo and every time she sends me to gynae they go " ibs" it like were banging our heads against wall. They all been men to, they just poo poo idea it could b anything else so i went gluten free, sugar free and dairy free for 3 months and what do u know , apart from losing weight im still in pain.

This time she sent me to a gynae ( a women) she goes to for her hrt clinic and wrote to her first to explain and she was fantastic and i have got a lap booked as a emergency so sometimes u just have to persevere and keep going!

It worries me though that people say u should only see a bsge centre as i have only got a normal gynae shouldnt they b able to see same things?

Nickimidge profile image
Nickimidge

I feel your frustration! I was fobbed off in my late teens as having ibs. The symptoms calmed down but always suffered. Now many years later. I have found myself in a lot of pain, an internal ultrasound found hydrosalpinx (blocked tube) saw my gynae last friday, he said some of my pain will be due to the hydro but after an examination he said i have ibs! I don't believe i have and neither does my Gp. So i have now booked another appt to speak to my Gp to see how we should go forward with this. Xx

Heloo85 profile image
Heloo85

Drs look for red flag symptoms. Bleeding outside of your cycle, infertility, abnormal discharge, family history of cancers and such! Many more if you care to use google! Pop a couple of red flags into the conversation! Good luck.

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