Desperate and feel so alone

[quinns1]

I have a complex endo history having had 2 bowel resections for bowel endo and multiple other ops related to endo. I have been doing everything I can to manage on my own but the pain I am getting vaginally, rectally and around my right ovary ( I have also had a left salpingectomy and oophorectomy) has become intolerable. I am also really struggling with long covid & I am convinced there is a link. Anyway, sorry for waffling!

I tried to get an apt with a gynae on the NHS but it is a 53 week wait so despite having lost my job due to this, I scraped enough pennies to see a gynae privately. When I saw her she said I was too complex for her and I would be better seeing another endo specialist but advised i had an abdo/pelvic CT. I questionned this because I thought an MRI would provide more info (I cannot tolerate anything vaginally so USS is not possible for me) but she wanted the CT. Had the CT & eventually got the result 3 weeks later (private CT!!!) and when I saw her to discuss the scan she was very dissmissive saying I just needed a good poo!!

Iam not constipated. When I got upset, she said 'its a great scan result, do you want something to be wrong?' & she discharged me. I just about got back to my car to sob my heart out. Of course I dont want anything to be wrong but why am I in this pain. Then to make matters even worse, she sent an email to my GP saying nothing was on the scan and i just need laxatives to get rid of my pain.

I do not know what to do, I feel like noone believes the pain I am getting and my mood is totally at rock bottom and Idont know howmuch more I can take. Anyones help would be so helpful

[Tropic]

I am so so sorry. That sounds so awful. I believe you.

I wish you lived in Adelaide Australia so I could refer you to my doctor who could help you.

I don’t know if this helps but the only thing I have found that helps me is gut health: no gluten, no dairy, no sugar, no processed foods. Take probiotics. Then I can get to a place with virtually no pain. It’s really hard work though.

I pray you find answers soon 💗

[K2023]

hi,I’m so sorry your in this situation,but my god what planet was she from.I would personally ring her secretary and tell her you want the process to complain.Ct scan can detect in some cases but not all and MRI by my experience don’t either.I’m 30 years with Endo and had CT scan back in Feb which said maybe Endo had MRI in May showed nothing there ,luckily I know there was and the consultant knew there was ,so had 5th laparoscopy and there it was adhesions completely distorting my anatomy and a pelvic mass that’s squashing Ureter ,my insides are a mess,but what if I had a useless gynaecologist and been dismissed ,god knows what would be left of my kidney if anything in few more years of trying to prove it..Personally I would contact the sectretary and also go to you’re GP explain how you feel and your symptoms and emphasise the pain ,tell them with you’re history the diagnosis was completely wrong ,show you’re disbelief and desperation for proper Endo consultation and mention this website ,I used it a while back and sharp seen a change in attitude towards me .I wish I could help more it’s bad enough dealing with this awful thing but it’s worse trying to prove it .stay strong and keep fighting for your answers .

[quinns1 in reply to K2023]

I am really poor with IT! I think I may have replied to myself rather than responding to all of you who have been so kind in responding! I have a GP apt this morning but have received a text from them saying I can only discuss one problem in my 10 minute slot & if I need more time I have to book seperate apts for each issue! I am such an emotional mess and crying so much that I dont have a clue how to manage this apt? Any thoughts PLEASE

[Brambledoggy]

I believe your pain and to be dismissed like that is rotten. I don’t think anyone understands endo pain unless they’ve had the condition and how could we expect that? I’ve suffered for 35 years but thankfully now post-menopausal so life has changed dramatically for the better as I’m no longer trying to climb bedroom walls to get away from myself and my debilitating pain. I would push HARD for a second opinion. Find a BSGE approved endometriosis centre local to you, (BSGE.org.uk) and get someone you like and trust to give you decent advice. TBH the NHS has been very good to me personally and when I did go private I was examined internally by a man who said he couldn’t “feel” my endo but he’d “have a look anyway” After my laparoscopic op, he admitted he wasn’t expecting the level of multiple lesions scattered all over my pelvis, bowel, bladder, etc so I know what the feeling is to be dismissed. I don’t know about high levels of oestrogen, I have always assumed that my endo was down to oestrogen levels being too high, but I’ve never in all my life had my hormone levels measured so I wouldn’t know. Don’t give up. We have to push hard to get answers. It’s not easy but please know there will be someone out there to help you, it’s just going to take time and a lot of research to find the right expert. And when you do I hope you get some relief.

[Raven23]

How horribly dismissive was she! Especially with your history. I'm so sorry.I have no advice but have seen you havent replied to others yet, just wanted to check you're okay? Well as okay as you can be. Hope you get the right help soon, keep going

[Marshkat]

I would definitely suggest you complain, particularly as you paid privately to see someone and she was so dismissive. Perhaps look on their website and send an email. My First “round” of endo 6 years ago nothing showed up on any scan. An expert gyno would know that a scan is not the only indication of endo. Don’t give up xx

[Lucie44]

Oh my god this is just horrendous! Im so sorry this has happened to you. believe you absolutely and I also think there's a link between Endo flare up and covid as mine went mental after the jab then again when I got covid, plus I got mid cycle bleeding after covid for 6 months so I definitely think there's a hormonal disruption with covid. How could she be so dismissive of your pain. Could it be nerve pain or adhesions causing the pain. This wouldn't necessarily show up on a CT. Even my MRI didn't show the extent of the Endo that they saw when they did the surgery.Perhaps go along with the laxative plan to prove to them this is not the issue whilst also asking for a second opinion from an Endo specialist gynae (bsge centre), as you are entitled to this. I'd tell the GP she said you were too complex and then said its just constipation as this shows she contradicted herself and so you want a second opinion. Good luck! I really feel for you as I've been on the receiving end of a bad gynae before I found a good one. I too was in tears. This should not happen.

[quinns1 in reply to Lucie44]

The trouble is I have never been so low. The long covid is ghastly and my quality of life is really poor because as soon as I try to have a 'normal' day out/have pain/get upset/am poorly it renders me incapable of doing anything but rest/sleep. I had a senior job doing 12 hour shifts and now I have been forced to apply for Ill Health Retirement but now because she has said the only thing wrong is 'constipation' it is likely I will either be refused or not be eligible for any financial help. I have no confidence/no life and have nothing in me to stand up to her. I have lost so much weight and look ghastly so how can she possibly think i am well? The letter to my GP is the thing that has destroyed me as I know she will think, Ive had a CT, a Cons has reported on it so me as a mere patient has to be wrong. I paid £942 for the CT, £200 for the initial apt & £160 for the follow up appointments hoping to get some guidance but instead i feel worse than I ever have

[quinns1]

Thank you all so so much, you have no idea what your help means to me especialy as I am so low. Unbelievably years ago I was accused of making up my symptoms (even though at that point I had had 2 bowel perforations during laparoscopy's, endometriomas etc and now I have absolutely no confidence. When she said 'you dont want anything to be found do you?' it threw me straight back down into that dark hole and I have never been this low.

I am really grateful to you all, especially as I know you all 'get it' so dont feel alone. THANKYOU WITH ALL MY HEART XXXXX

[Edda13]

I am really sorry for your experience. I still cannot understand why the majority of doctors are so dismissive with endo patients, it's frustrating and infuriating. And that comment regarding your vowel movement it's not very professional, she was manipulative. On my first appointment my gynecologist rid of me by saying it was IBS, when I told her my bowels were ok and didn't feel nausea or any digestive issues. They just assume they know better.

[quinns1]

I am really poor with IT! I think I may have replied to myself rather than responding to all of you who have been so kind in responding! I have a GP apt this morning but have received a text from them saying I can only discuss one problem in my 10 minute slot & if I need more time I have to book seperate apts for each issue! I am such an emotional mess and crying so much that I dont have a clue how to manage this apt? Any thoughts PLEASE

[K2023 in reply to quinns1]

hi, would you have time to write down your symptoms before your appointment,I find this helps and stops the anxiety of forgetting or not getting my point across.I would really write down symptoms and your past diagnosis and after they’ve read it ask how can you be treat and mis diagnosed like this and left in this pain.Hope you get on ok .Big hugs

[Dee_EndoUK Moderator Endometriosis UK]

Hi quinns1

We're so sorry to hear what you're going through at the moment. As K2023 says, if you have time today before your appointment, please write down your previous endo history, as well as the ways that endo is impacting upon your life. Make sure you fully explain the pain you are in and where you're experiencing it. Hopefully your GP will be supportive and recommend further investigation. If not, and you need support after your appointment, please do call our free helpline (0808 808 2227). It is open most days and is run by volunteers who all have experience of endometriosis and will able to signpost you to next steps in securing a diagnosis and suitable treatment. You can find out the times it is open here: endometriosis-uk.org/helpline

Take care - wishing you all the best x