Please help. Where do I go next?

[sweetpea2288]

I had my first gynaecology appointment this morning and have come away feeling like I haven’t been listened to and my symptoms are not real. I am considering my next steps and whether to go back to my GP. I had been waiting 1.5 years for this appointment and feel very upset that I may now not get any further in finding out what is going on.

I have struggled with very painful, heavy periods since I was a teenager. I am now 24 and they are beginning to impact on my home and work life significantly. I feel I have many of the symptoms of Endometriosis and maybe PCOS too, but today was told by my gynaecologist, no, you just have constipation.

I wasn’t given much of an opportunity to explain my symptoms, but have included them below. I think they are similar to Endo, but as I haven’t been listened to I can’t be sure.

I experience pelvic and lower back pain, especially on my right hand side at varying times in the month, but mostly on my period. The pain stops me doing my daily activities and I often have to work from home and cancel plans with friends/ family. I often cannot get to sleep or wake up in the night with the pain and have spend many nights in a ball on the bathroom floor.

I have been on and off the contraceptive pill since I was 13 years old to try and help with my pain and heaviness. The pill does not always agree with me and I find it affects my mental health and other than making my period days longer (every 28 instead of 21) it doesn’t do much. I find that the heaviness of my period does not change, and I continue to have palm sized clots each month. I take mefenamic acid before and during my period, along with paracetamol, ibuprofen, and sometimes co-codamol. My hot water bottle is stuck to my belly and back like glue and I always carry one everywhere I go to try and manage the pain.

Sex is also extremely painful. The pain is deep inside and I can barely tolerate any penetration. Whether that is from sex, or just using a tampon. The pain will stay for up to 2 days following. This is a particularly upsetting symptom for me as has impacted on relationships. I often wonder whether my body automatically becomes tight and dry from the fear of pain it is about to experience.

I have always struggled with constipation around my period for which I take laxatives and manage my diet well. I have had episodes where the combined pelvic pain and sharp constipation pain have caused me to pass out whilst in the bathroom. I can very quickly fluctuate between being constipated and diarrhoea and sometimes can happen very suddenly. I also have pain in my bladder, especially when it is full and when I am relaxing my muscles to go. Urination can also be very sudden.

Other things I have noticed but aren’t sure if this relates are night sweats, low energy / fatigue, migraines, excessive hair growth, significant bloating and loss of appetite.

Today my gynaecologist completed an internal examination, which she thought was normal. I could barely tolerate the exam due to the pain, but she explained that internally, everything looked / felt ok. I also had an ultrasound scan 1.5 years ago when I was referred which also came back normal. My gynaecologist explained that the likely cause for my issues is constipation. That the bowel can become inflamed and restrict blood flow. I can understand this may be contributing, but does not explain how heavy my periods are and a lot of the other symptoms I have described. I take laxatives and manage my diet well, how can constipation be the sole cause?

I was not offered any further treatment other than going back onto the contraceptive pill. Her advice was to speak with my GP about managing my constipation better, even though this only happens once a month, and I already take medication. I feel lost with where to go, or whether my symptoms are anything at all.

[Anne357]

Hi sweetpea 2288 ,i am sorry u r having difficult time ,similar to mine.I can say from my own experience,I was not listened by doctors too at first,now after 2,5 yrs(walking is sore too) i am going for colonoscopy as Surgeon said probably IBS which i dont believe at all ,having similar symptoms like u or worse,but i talked to my GP again and she referral me to gynecologist only now -thinking could be endometriosis.Maybe will be good idea back to your own GP or different one explain again all details better write it to remember all and to ask to be referral again to see urgent gynecologist but which has specialisation with endometriosis.

You should fight 4 your rights,u know your body the best .All the best!

[groggy-froggy1]

This is absolutely ridiculous and a common issue with young women reaching out for help. All your symptoms are real and I went through the EXACT same thing, my right side by my pelvis is the most painful spot for me too.

I’ve been on the pill since I was 13, had the rod too but it didn’t help at all. I highly suggest calling up the gynaecologist or GP for a second opinion, you really need to put your foot in and demand what you need because most of the time they will palm you off with meds that don’t help.

What you should do if you’re certain it’s endometriosis is as for a laparoscopy to diagnose and/or MRI scan. I suggest doing a little research of the specialist surgeons that deal with endometriosis and asking your GP to refer you to speak with them.

Goodluck!

[laura98]

It made me so angry reading this, I am so sorry that you waited all that time for your referral and you’ve been dismissed like that. Your symptoms match what a lot people with endo struggle with and just saying it’s constipation and to go on the pill is ridiculous. I don’t know how it works with a second referral on the nhs, as the waiting lists are through the roof, but I think you definitely need one. Could you maybe go private for a consultation and see what they say? I hope you’re ok, and please don’t just settle with what this doctor has said, you know your body x

[atealdeer in reply to laura98]

I second going private for a consultation if you struggle to get your GP to refer for a second opinion. Mine cost £200 with the lead surgeon of my local BSGE endo specialist centre. Just google your local centre and then google the doctors there to see who you can pay to see at a private hospital.

I went from feeling crap and disbelieved by an general gynae registrar (even though her consultant had said it sounded like endo) to being told by an endo specialist consultant that I probably have endo on my bowel, bladder and maybe diaphragm. It made a huge difference to my confidence dealing with the general gynaes I'm seeing on the NHS. I'm so sorry you waited so long and got dismissed in such a way. You really need a second opinion, whether on the NHS or privately. Wishing you strength x

[Dogmad6]

How useless is that gynaecologist! What a horrible nightmare for you. I think you should seek a private consultation with a proper endometriosis specialist. Do your own research and find one and then ask your GP for a referral. Sometimes you don't even need a referral. You could phone the specialist's office and ask if you actually need a referral.

Good luck! You seem to have all the symptoms of endometriosis. How can they possibly think it's just constipation? It's disgraceful to fob you off like that. xx

[Sun_Kissed_Princess]

I’m saddened and angry after reading your post. But it was extremely similar to my experience. Unfortunately this whole situation is and will continue to be a battle for you. You are going to have to fight to be heard and to get the treatment you need.

Going on personal experience my suggestion would be to go and find a endo specialist consultant pay and have a private appointment with them. I did this and they gave me the option of having a laparoscopy on their nhs list. Finally it was confirmed that I do have endo.

Also in the meantime speak to your GP about being referred to pain management, that’s very important with trying to manage any type of chronic pain.

I wish you all the best!!