Help with getting diagnosed with endo

[Sky342]

I have been suffering the last year with pain, severe swelling, severe back pain, bad anxiety and depression. My periods have started to get a lot worse to the point I’m on the floor crying. I have pain everyday I had to quit my job. This week my back has stopped me from doing everything- including walking. I have no social life anymore due to all of these symptoms and I just need help as my doctors are fed up listening to me and think it’s for sympathy. I am also experiencing pain when going to the toilet which has progressively got a lot worse. Please if anyone can relate I would appreciate the support and advice forever!!

[Jenn2022]

I'm so sorry. It makes me so angry that women are left to suffer like this. If you can't find another gp the only thing I can suggest is to pay to get an MRI scan done privately. If that shows endo you can take it back to your Dr and demand a referral to your local hospital.

[Sky342 in reply to Jenn2022]

Thank you❤️I have been requesting a MRI scan to see what is wrong with my back and they won’t allow me to get one and they also won’t allow me to get a internal ultrasound as I am only 18. I am going to try and save up and go privately for an MRI although that could take along time.

[Jenn2022 in reply to Sky342]

An internal ultrasound probably wouldn't show much unless you have cysts. The mri would be the thing to aim for, though I've no idea how much they cost to do privately.

Good luck.

[MeshaW]

This is exactly what I’m going through. It’s frustrating and I sympathise with you. I went private for a second opinion and also for reassurance. It’s not going to be easy but I’m just wondering since you’ve had to leave your job, was you able to get help financially. What hospital do you go to if you don’t mind me asking?

I’m currently in hospital as I type this with stage 4 endometriosis, so you are not alone. If you ever want to let off some steam or ask question then please feel free to pm.

♥️

[Sky342 in reply to MeshaW]

I am so sorry you are going through this, my heart breaks for anyone in this position!! I am not getting help financially. I am in my last year of A levels and haven’t had a full week of attendance from the beginning of the year. I got referred to a gynaecologist in September but he had already made his mind up before seeing me that it was related to his field. He didn’t even do an examination on me just sat me on a chair and told me it is probably IBS even though I have already tried medication for that and changed my diet.

I also went private in august to a gynaecologist who didn’t know exactly what was wrong either he recommended me going on a temporary menopause to see if that helped which I was not comfortable with. I can’t continue to go private as I am not financially stable to do so.

What are you symptoms like and do u have pain everyday or just when your period is here? Also thank you for replying❤️

[MeshaW in reply to Sky342]

I totally understand. I’m a full time student also and I have a full time job which I’ve now has to go on sick leave because of how bad it’s been. Have you tried UCLH hospital? They have the best gynaecologist/endometriosis team which have been helping me. I’ve been throwing up on and off since last year November. Bleeding on and off with very heavy and being bed bound. Ive been hospital 5/6 times since Christmas which is ridiculous. They’ve put me on prostap which is the temporary menopause injection. It’s a waiting game until I have my surgery so I want to try and get things done beforehand than being sick.

[Elsiegreeneyes]

I can completely relate to your post and I am so sorry that you are going through all of this. Unfortunately I had to suffer from a multitude of symptoms for a number of years before I was diagnosed through a lap (4 years ago) and only recently began to get support that is helping manage my symptoms better.

It's awful that we have to go through so much pain, anxiety, misdiagnoses and trauma. I feel like endo journeys are like running a marathon- long, grueling, exhausting and requiring heaps of stamina, pacing, inner strength and determination.

I have joined many pain groups to help support and educate me about living with a chronic pain condition and how we can make changes in our lives to better manage our symptoms. However, it makes a huge difference to have support, knowledge and compassion from medical professionals - this seems to be something that a lot of women with endo are struggling to find.

Sending healing hugs to you and hope you get some answers and support soon ❤️

[Sky342 in reply to Elsiegreeneyes]

This is so kind❤️I’m sorry you have to relate to my post as I wouldn’t wish it on anyone💔I’m so happy to have come across this page as everyone is so kind and understanding!! Thank you

[Elsiegreeneyes in reply to Sky342]

Yes, it's nice to know that we are not alone. I always find it fascinating that there are no two bodies the same - of all the endo sufferers, everyone has different symptoms and experiences. This can make the journey very isolating too. I hope that you take time to look after yourself, find ways to relax and love your body, despite its pain and problems. Take care ❤️

[Angellouise]

I’m sorry you are going through this my 20 year old daughter has been going through the same thing for five years. She is waiting to see a gynaecologist who specializes in endometriosis. I hope you can find a gynaecologist as well that specializes in endometriosis. Keep strong and keep searching for help. I wish you luck

[Sunflower6758]

I'm so sorry you've been going through this. It's just awful. I don't know if you've done this already but the best thing I did was going into emergency Gynae A&E (at Coventry Hospital) when I last had a crippling flare up. Maybe I was just lucky to see a good doctor, but as it was A&E my pain was taken a lot more seriously, and I got seen very soon after by a specialist who has started investigating more thoroughly. The doctor at A&E said she sees 4-5 women a day who come for morphine for their Endo pain. It's just unbelievable! Having to go to hospital for morphine every month is not a solution, we definitely need more than this. I really hope you are taken seriously soon and start finding some treatment options to cope with the pain. I am trying the combined pill which has helped symptoms a lot, despite the difficult moods, but I take Starflower oil to balance these which is really good. Please know you are not alone in this and that your pain and suffering is valid <3

[Cockapoo-2016]

Hi There.I am so sorry to hear you being let down by the NHS.

I had most your symptoms pain bowel movement, painful periods, lower abdominal pain, lower back pain, pain in thighs and fatigue.

Back in 2021 out of nowhere I ended up getting severe lower abdominal pains and plevis pain. I thought really bad period pain took pain killer nothing, the painwas so severe that I rolled myself in a ball and couldn't get up off the floor.

My partner called for ambulance and was told to wait 4 hours for one, at this point I was screaming in pain and 😢. I was 😨 not knowing what was happening to me. My partner and a few neighbours managed to get me in the car to go to A and E. I arrived in A and E got told to wait the last thing you want to do is wait when you are in so much pain. I got to see a A and E doctor took some bloods and order a CT scan. The results came that I had a Cyst on my left ovary wand was given strong pain kilkers from a drip.

I was told by the A and E doctor I have referred you to a gynecologist urgently for the next day sand they will call you when to go in. A week went by no call, so I chased the hospital gynecology dept no record of a urgent ultrasound referral was made. So the gynecology reception looked into it and was told there was a mix up. Finally I was booked in for the next day to have a ultrasound, it showed a cyst of 8cm on my ovary. After the ultrasound I was told to go to another department urgent care to see a on call gynecologist at this point I was losing my patiences. After waiting for nearly three hours the gynecologist who was on call came and told me that I needed more blood tests. Then she came back and told me it was endometrioma cyst on my ovary, the reason I was in pain bc the cyst had twisted and I was lucky it had not reputed. I asked what happens now you have to wait for me to refer you to a gynecologist sugeron and wait for the letter to come through. So at this point I asked what if it happens again to return to A and E, what a joke.

The next day I made a complaint to PALS who deal with complaints from patients who have not received the right care and treatment. Once I made the complaint out of the blue I get an appointment with the consultant gynecologist the very next day. I was told it could be endometrioma cyst or mucinous ovary cyst. More blood tests bc my ca125 was so high. I got booked in for urgent surgery. I was booked in for a laparscorpy on the 21st of October, on that day five hours later my surgery was cancelled, has so many doctors asking questions bc they didn't know what they were dealing with, so I was sent home and wait for a reschedule date for surgery. Again was left hanging I was scared the cyst could repute, so I chased the hospital again and again until I got my surgery date for the second time on the 2nd of November surgery booked for that day. The outcome was removal of endometrioma on left ovary, attached to the plevis wall and rectum. Two weeks after my surgery I had my MRI scan to see if widespread. Now I get my results on Feb 17th want a joke.

My advice to you look to go private as you have not under the care of NHS and not been diagnosed you can go private I couldn't go private as I was already diagnosed and under the the care of NHS.

If you go on the Internet look up private care insurance ie Aviva health care, Bupa, freedom health net etc, look in to getting insurance that covers, CT scan, ultrasound, MRI, surgery, see private GP for referral, the will give you quotes how much you pay monthly to cover your health care. I don't know what your financial situation is or second choice keep fight like I did. No one should suffer in silence.

I wish you all the best and your not allow.

🌹💛 xx

[Sky342 in reply to Cockapoo-2016]

That makes me so sad and angry that you have had to deal with the constant feeling of being let down and not knowing who to turn to. I hope your results come back all normal and you don’t have to deal with that again. I will look into them health insurances and maybe be able to get somewhere with getting diagnosed. Thank you for your message and keep sharing your story, you will help so many people❤️

[Cockapoo-2016 in reply to Sky342]

💐 Your very welcome 🦋. It makes me sad too that women are being let down and left to suffer. Hopefully more research will go into getting women diagnosed with endometriosis. Stay strong 💪and keep fighting xxx.