Fobbed off and fed up

[Aimv]

So I was diagnosed with endometriosis in my early 20s, I'm now 37. I've had a couple of surgeries and a 6 month course of Zoladex during this time. I've tricycled my pill and also had a mirena coil, which was removed due to bleeding after 3 years of having it.

My endo symptoms have got worse over the last couple of months, I have to push for the Dr to give prescription for naproxen and just been prescribed mefenamic acid (new one for me to try)

I know I had a nodule on my bowel and trace of endo on my bladder. During my period I'm passing blood(like threads of blood) in my stool and it hurts to open my bowels and sometimes I find it really hard to urinate.

My recent smear showed a lump under my cervix, which has been checked and is not cancer. I'm thinking it's endo related, but I've been given the "no clue" and to be honest pushed to one side despite all the above symptoms. The Dr I saw said, you've probably always had it, but given the smears I've had and other procedures, it must have been noticed before??!!

I've also had awful nerve pain going down my left leg (last 2 years) - was told I was ridiculous for suggestioning this could all be related.

I've asked my GP to refer me to gynae who specialises in endo and someone I've seen before but they have refused.

What can I do? Can I insist on being referred? My GP said to wait to see the gynaecologist for the lump they can't seem to fathom but surely given my history it makes sense to refer to a consultant who specialises in Endo?

Any advice would be really appreciated

Thank you for taking the time to read ☺️

[Knina]

Hi, sorry you are going through so much. I would insist to see the specialist long time ago. It looks like you might need a surgery to make you feel better. Do not liste to GP in this case, they are not specialists. Your leg pain might be related to Endo, it is not ridiculous assumption. Good luck! I hope you will find your answers soon.

[Aimv in reply to Knina]

Thank you x

[Elismummy90]

im going through the same in regards to being fobbed off left right and centre. I know its hard (i struggle myself) but try and stand your ground! These days doctors arnt helping at all, dont ask to be referred TELL them you want referring NOW! Or keep making appointments over and over again till they listen. We shouldn't have to beg and pleade for help like we are doing, its neglect and a damn disgrace! I really hope you get some help hun x

[Aimv in reply to Elismummy90]

Thank you, same to you! I struggle to even to get to speak to a GP these days. I'm lucky if I manage to get an E-consult response that's not a text back. It's so poor and unacceptable.

I will keep trying, with hope I'll get somewhere. It's hard not to feel gaslighted with it all! X

[Elismummy90 in reply to Aimv]

thank you i manage to get through to them but they literally dont listen to a word i say, keep getting sent to different departments and ignored. They ask me what i want them to do THEN when i tell them, they go for fastest and cheapest option. My mental health is at an all time low because no ones helping, no matter how much i cry and break down they cant seem to get it in their heads that im not lying! Its good to talk to people in same boat though x

[Aimv in reply to Elismummy90]

I totally get it. The level of pain you deal with us immense and it's no wonder you end up feeling down. Even in between periods I'm in some sort of pain, it's exhausting. I am on amitriptyline for the pain in my leg but its meant to help with anxiety too and I do find it helps, something to consider for you? You take it at night so it can help you sleep better too. X

[Elismummy90 in reply to Aimv]

mines constant, day in day out. I think its spread to my bladder but instead of doing tests and helping me he just said yeah it sounds like it, lets put you on coil! Now iv been bleeding since and the pains are worse if anything 🤦🏼‍♀️ honestly i give up! Its a constant battle and these clowns should be helping us not letting is suffer!! Ahhhh thats something i deffo think i need to try! Thanks 😁. Im on all sorts right now 😂 but thats a long boring story hahaha x

[mwalden1607]

I was on mefenemic acid and transenemic acid for over 6 yrs they helped with the pain but upset my gut in the end so now just on amitriptyline and this has helped with my anxiety but not the endo unfortunately I’ve ran out of ideas for me to take for pain relief I usually have to just cry my way through it with heat pads

[Aimv in reply to mwalden1607]

I feel that, it's so hard when you're in agony. As much as my partner tries to understand, I really think he doesn't get understand the extent of the pain. Sometimes I'm close to burning my skin because I'm holding the heat pad to help try and ease the pain.

I'll keep pushing. Thank you for replying x

[CCWildSwimmer]

Hi and very sorry that you are going through this. Given that you have already been diagnosed with endometriosis, it seems strange that you are being denied gynae care…. Have you been referred for any scans (MRI or CT as ultrasound won’t pick up endometriosis)? Also, worthwhile asking to speak to another gp until you find one who is less dismissive and willing to help (unfortunately many are conditioner to ignore ‘women’s issues’, however there are some great ones out there if you persist.

[ferns80]

Hi

I’m really sorry you’re having pain and being fobbed off. This doesn’t sound right at all.

I had blood in my stool during my period for 20 years before being diagnosed as I thought it was normal to bleed from your bum during your period.

This is a sign of bowel endo and my understanding is that bowel endo is classed as stage 4 and that people with stage 4 endo should be referred directly to endo specialist.

Long story short: I was fobbed off a bit by the gynaecologist even but when I told my GP about the blood she referred me for a flexible sigmoidoscopy to rule out other issues.

A laparoscopy in my local hospital showed bowel endo and I was then referred for an MRI after which I saw a specialist in Aberdeen. My endo was visible on the MRI.

Turned out I had quite extensive nodules including one from the back of my vaginal wall that was almost into my stomach. I’d always had really painful smear tests and one of the surgeons said that was why. Not a dr but maybe the lump is something similar. Certainly the specialist said she could feel the endo when she examined me.

It might be worth speaking to Endometriosis UK about the guidelines and how to approach the GP about those as I’m not 100% sure but that’s certainly the argument I used to be referred back to my endo specialist for further surgery.

[Liv23]

I hope you have some relief from mefanamic - I have found it to be an effective and fast pain reliever and its anti-inflammatory effects also mitigate the fullness and heavy sensation you can get with endo and adeno.

As far as your frustrations with GPs go, I wish I could be more helpful than to simply say I have been there. I was also recommended the mirena coil and had to have it removed after trying two coils and rejecting both within days - very painful. It's exhausting to be given constantly changing medical advice, wait months for consultations let alone procedures.

What I will say is, the best advice I've received was: You CAN disagree with a diagnosis. You know your body. TELL your doctors what you are experiencing and TELL them when you believe they are wrong. You can 100% insist on being referred, and in fact if you aren't getting the care you need you should DEMAND a new doctor.

This can feel scary and unfair especially if you are in the UK using NHS services, I understand. However, what's even more scary and unfair is the lack of research, resources and attention invested in women's health conditions. Push and shout until you get what you need.

[Charliebh12]

Can you not see an endo consultants privately for a consult ? Just the consult and then ask to be referred onto their NHS list ? It would be worth getting their opinion and £150 well spent if it gives you the right path forwards. General gynae are useless at endo. Your cervix does sound like endo possibly bowel related, pouch of Douglas, maybe rectocele. I would take the chance and book one consult privately with the consultant of your choice.

I used to bleed anally and had a lump and it was all endo x

[Aimv in reply to Charliebh12]

I think I will look into a private appointment. Thank you for replying, makes me realise I'm not going crazy or the only one going through this x

[Aimv in reply to Charliebh12]

I had my private appointment today and Mr Elkington was lovely. Went through everything, evening I've described is Endo related and a plan has been made for NhS referrals as I can't self fund everything. He has mentioned the possibility of a hysterectomy too.