MRI - scan - symptoms worsening

[Booknerd1598]

Hi all,I have stage 3 endo with ovarian cysts diagnosed with a lap in 2022. I then gave birth to my son sept 23.

Ever since my son (who i absolutely love to bits and am so lucky to have as i was told kids probably wasnt going to happen) my symptoms have got so much worse and my health in general has plummeted.

I don't know what to do im in so much pain. Ive been to to A&E for pain, PID linked to endo, and what the gp thought might be ovarian torsion. Each time i have a ultrasound that comes back clear and im discharged dispite me saying its always clear even right before my lap which had quite extensive implants and cysts.

The gp wont do anymore for me and keeps putting my cocodamol back down to 15mg from 30mg implying im addicted when thats not the case, so that barely does anything. I am waiting for a gynae referral that was put through in april but havent heard anything since. The gp also told me they referred me to pain clinic in feb with the original gynae referral (which got closed cos i hadnt been on the pill longer than 6 months since having my son) but found out last week they never did this and now want to wait for gynae.

Its getting to the point that im considering getting a loan to have an mri and possibly another lap. (I paid for a consult in start of april and they suggested a new pill called slynd which i cant get on nhs and too expensive private, an mri and likely lap, i just dont have the money). I've had to call in sick to work so many times and ive only been back at work from mat leave 2 months. I'm honestly at breaking point idk what to do.

Any help or advice will really help. Has anyone had an mri? Was it worth it? Anyone gone private?

Thank you

[Tangoandmax]

Hello, I’d ask the GP to ask the gyne to expedite your appointment. It likely won’t speed things up but it might and it’s good to have them advocate on your behalf, have the urgency down in writing. Asking to be added to their cancellation list may also speed things up if you can make it work.

Im on my third gyne referral to my local hospital (all previous had been normal ultrasounds and therefore, I was fobbed off and sent away) I was referred in November 2022 and didn’t get an inital appointment until September 2023. The waiting lists really are shocking at the moment - I’m sorry you’re going through it.

I paid for an initial private consult with a specialist which was £275, but eventually got my MRI on the NHS which showed a lot more than all the ultrasounds which were mostly normal, it could probably worth paying for one if you can and can’t get the NHS appointment brought forward/if you’re really struggling.

Good luck xx

[Booknerd1598 in reply to Tangoandmax]

Thank you for the advice! I'm going to try and get another gp app today and get the referall info to do that. I had paid to see a private consult and it was worth it until you try putting it back into nhs!

You would think they would have better practices once your diagnosed but its like getting rediagnosed all over again isnt it.

Im so sorry your on your third referral.

I hope you get seen quicker than your intial one!!

[Prilo]

Hello, cocodamol sometimes worsen the symptoms of Endometriosis so it will be good if you ask your gp to change the painkiller that you take. My symptoms reduced when I stopped taking cocodamol

[Booknerd1598 in reply to Prilo]

Thank you,Ive tried getting my gp to change my painkilers they just say that theres nothing else i can have and at the moment cocodamol is the only thing that helps. But they've also said they dont want to refer me to pain clinic as there is "more avenues to explore" but then go right back to saying theres nothing else.

What did you change too if you dont mind me asking?

[Prilo in reply to Booknerd1598]

That’s so sad to hear. My endometriosis symptoms started after I began taking cocodamol for my period pain and when I went for a private scan during an ivf process, they saw traces of endometriosis and I was also having pelvic pain at that time. I am originally from Nigeria, africa and most of us women use the drug Felvin for period pain. Sadly it is not sold in uk so I had to have friends coming from Nigeria buy it for me and I only take it during my period. Noticed my endometriosis pain stopped after I stopped the cocodamol and even when I had a terrible Lupus flare and was admitted, I made sure I told the nurses am allergic to cocodamol so they never gave it to me. I was give morphine instead but I also didn’t take that for long cos it has its own side effects. You can let your gp know you are allergic to cocodamol, maybe that will make them change to another painkiller.

[Booknerd1598 in reply to Prilo]

Thank you. I started cocodamol due to endo pain. I've been on it a while so that wouldn't work.Glad its worked for you though!

[Bakewey]

unfortunately, many women need to be the ‘squeaky cog’ to get anywhere with this!

Before embarking on more surgery, I’d suggest going to see a private gene doctor. Ask for them to request all of the information that is on record for you and for them to explain exactly what is causing your pain.

They will then be able to guide you to a suitable health care facility. That what I did, it turned out to be the best £150 I’ve ever spent. Their guidance was super helpful l.

I hope you get some relief from the pain soon. I wish I could offer advice as how to ease it.

Sending you my best wishes.

[Booknerd1598 in reply to Bakewey]

Thank you i will try that.

[KezMurr]

Maybe it's worth changing gp? All my scans were clear including 2 MRIs, even though I have stage 4 endo with bowel and uterus adhered so be prepared for that to come back clear too And apparently mine was analysed by someone skilled in reading scans regarding endo! Xx

[Booknerd1598 in reply to KezMurr]

Thank you, unfortunately its the best gp in the area, i changed last year as the other one i couldnt even get in the door!

Oh no im so sorry that happened, its so frustrating isnt it. X

[KezMurr in reply to Booknerd1598]

Ugggh thats so frustrating and annoying for you! Is there another gp in the practice that you could change to? It doesn't sound like they're listening to you very well which sadly is so common with our condition. Yes clear scans are quite annoying! I had my lap in March where they found the stage 4 endo and it was too complicated to remove without a bowel surgeon so was told that I would have an appointment to meet him after another MRI. MRI was all clear so I was discharged without being informed. How ridiculous is that...!! No-one there must read patient files.

So I've had to start the referral process again! And due to see another gyno in 2 weeks to explain this all to again, in order to get referred for bowel surgery to remove the endo. It's such poor aftercare in my experience. Hope you have much better luck and your pain decreases. xx

[Bakewey in reply to KezMurr]

Have you tried going to A&E when you are in severe pain? I did that, afterwards your case then needs to be reviewed in 2 weeks and your GP will be sent an update.

[Booknerd1598 in reply to Bakewey]

Everytime i have been (about 4 times thid year so far) i get sent up to gynae, they examine me, i get sent for ultrasound and they come back clear and i get discharged without looking at my history or records, without changing my meds. GP doesn't check up on me and it starts all over again. They won't speak to gynae specialists (who im still waiting to see from a referral) to speed it up either so im stuck.

[Bakewey in reply to Booknerd1598]

I echo the sentiment below. It’s time to contact PALS at the hospital.

[Booknerd1598 in reply to KezMurr]

Its such poor aftercare! Im so sorry your going through that!. My follow up from my laproscopy was a 2 min phone call saying i had stage 3, reconstructed ovary, probably wasnt going to have kids, stay on the pill and oh we're discharging you. Gps arent any better. When ive gone to A&E its the same, sit for hours get barely listened too, ultrasounds clear theres nothing they can do and discharged.

I would put in a complaint if i was you, thats terrible. I hope it gets sorted for you.

[BloomingMarvellous]

Two small things; Endo pain is often aggravated because the lesion tissue is nerve rich without any myelin protective sheath. Hence it hurts like hell. Opioid based pain relief often has little effect on that pain pathway and requires a different approach. It requires increasing doses for reduced returns in terms of relief. Paracetamols reduce the levels of Omega 3 (DHA/EPA versions) levels in the body which are frequently seen as lower in Endo cases. Omega 3 is implicated in the management of general inflammation, gut health, hormone balance and you’ve got it- nerve pain. Hence the importance of fatty acid balance in pain relief. I take Omega 3 ( high quality professional level to dose daily) and that’s been a turn point. My gut was a complete mess so inflamed, constipated and ballooned with horrible pain and then infections.

You can be prescribed Nortriptyline or its less helpful version ( more side effects) to help with pain by your GP. Lowest dose is 10mcg I found 5mcg nightly has been a godsend. It works on Centralised and nerve pain pathways which is effective because of the nerve rich tissue. You will need to drink plenty of water and it builds up its effect after a couple of weeks so it’s not a take as and when . I don’t understand why this hasn’t been offered as a suitable option for you. Some people don’t tolerate Amitriptyline ( I found it unbearable ) but are fine on Nortriptyline.

Our bodies also remember and carry a physiological response to repetitive pain and can create more pain by reflex as well. It’s a complex process but well worth addressing . It’s Centralised Pain Complex. It is not “pain that’s just in your head “ but measurable pain however the approach to treat is more novel. Having tried some elements of a programme I find really helpful before as stand alones ie CBT, meditation without success I was more than sceptical but actually for pain management I wouldn’t be without it . It won’t fix the lesions but it helps untangle the add on pain. You can try it for free - GP’s can prescribe a six week trial or you can do a 2 week free one yourself signing up. Look for the Curable App . It’s really worth a crack whilst your juggling the rest and the advantages are non frigging dr can take it off you or deny you care .

[Booknerd1598 in reply to BloomingMarvellous]

Thank you for your help!I'll look into taking supplements like that. I was on Amitriptyline for 5 months and it was unbearable it actually made me so much worse i came off it myself as my drs weren't listening. They haven't suggested norotriptyline yet so i will look into that.

I am on gabapentin they've upped it today to 600mg (200mg x 3 a day).

I am a mental health nurse so i do try to get on board with cbt techniques, but i haven't heard of the curable app before, i will have a look now.

Thank you again.

[BloomingMarvellous]

Do try it. Lots of interesting research etc . You might also find Katie Edmond’s Book Heal Endo a useful stalwart in terms of research and self support alongside standard care . I found it after I’d already got there myself ( have a medical background too ) but she’s drawn a lot of useful threads together.

[Booknerd1598 in reply to BloomingMarvellous]

Thanks for the reccomendation!

[BloomingMarvellous in reply to Booknerd1598]

Let me know how you fare !

[Sparkles2000]

Hi I just wanted to add to the many comments. Being on pain medication that knowingly gives you constipation and slows your gut down made me worse. But it’s a vicious circle and I know the feeling you can’t seem to get out of it. There is a lot of benefit from trying the fodmap diet. Also the books mentioned by Katie Edmond’s etc are amazing. It’s difficult to process all of the medical info and your symptoms as well as be a mum hold a job down. I’ve been on prostap for months and while I haven’t enjoyed the side effects it has stopped the endo symptoms and while they have been reduced I have tried to change my diet.. reduced the stress in my life. Also done an intolerance test which was mentioned on a thread. In fact I have managed to give myself some relief. But can’t wear jeans or trousers .. still I have attempted and my upper abdomen is 3 times the size it normally is from the fibroids I think! Clothes and anything with a waist band .. high waisted especially..zips.. are a no ..Lululemon leggings are a god send. My story with all of this is a joke because I waited for my surgery.. then they cancelled it on the day because I looked fit and well! That’s ignoring the scans.. my symptoms and well putting me on prostap.. a 2 year saga but has some similarities to everyone else in that I been off sick at work .. my mental health has suffered and I’m a single parent so your stuck between feeling ill and worrying you will loose your job… hope you find some relief soon. Bestest wishes…

[Booknerd1598 in reply to Sparkles2000]

I really sympathise with you! Your doing an amazing job as a mom. I dont know how i'd manage looking after my little one on my own! Thats terrible they cancelled it! Did you put a complaint in? Drs just dont want the hard work or to even read. (Ik its not all drs, but been on both sides as a nurse). Im so sorry your going through that.

Me and my friend (she is undiagnosed but like everyone else is a whole saga) made a plan last night from everyones advice. So will be stocking up on supplements , getting that book suggested and doing some endo specific yoga we found.

I basically live in skirts and dresses for the same issue. I used to love fancy belts, corsets etc (bit of a goth) but i can't anymore.