New diagnosis how to cope? General advice

[Sabrinacolada]

Hi everyone,

I have only just been diagnosed with endometresiosis last week after having to pay private for a laporoscopy due to the long nhs list and debilitating pain. Plus the usual painful heavy periods normalised when I used to see my GP. I had severe pelvic pain about 6 weeks ago which had made me go from fit and active to bed bound and unable to work ( I am a veterinarian). Long story short my initial a&e visit found what they thought was a follicular cyst. From then onwards I had re admission,more imaging. And eventually was hospitalised for a week because the pain was unbearable with limited response to opiates. I also began to experience bladder pain and urge to urinate constantly. Issues defecating but also accounted to high opiate doses.

I felt often dismissed and told cysts are painful. This was even while on the gynaecology ward by registrar and some consultants. From about 2 weeks after the initial pain I had a suspicion myself of endometresiosis. And when the bladder had pain proven not to be a uti I had actively told every doctor who had seen me my concern for adhesions, endometrial scarring that could permanently damage other abdominal organs. Since a couple of weeks ago I was already hospitalised I was placed on the emergency surgery list for diagnostic laporoscopy however ultimately it ended up as 5 days nil by mouth ( on fluids, eating a sandwich at 9pm to be told surgery won't happen). In hindsight it felt like physical and physiological torture. Eventually I was placed on the elective list for 26 August ( which after reading some posts realise now tragically this is "fast" for nhs).

26 July I had a private laporoscopy. He found stage 3-4 endometresiosis with the fallopian tubes/ovary adhered . Nodule from uterus to bladder ligament ( hence the bladder pain) . The sigmoid bowel was also adherant. He removed the adhesions with priority to free the bowel and removal of nodules. Also said possibly adenomyosis of the uterus. I am told I qm likely infertile. There was no cyst!!! Just an ovary engulfed by so much scarring!3 ultrasounds, 2 CTs didn't see this.

I am so disappointed that even expressing my concerns of endo, adhesions other organs could be damaged as a source of pain. I was told cysts are painful and referred to pain management. I told them even on morphine I was waking up with stabbing pain.The couple of consultants who also said laporoscopy is needed became trapped since I was told I am not emergency since I won't die without a laporoscopy. But elective would be over a 6 month wait regardless of the pain level.

So I am about 8 days post op now. The sharp stabbing has mostly gone but I have some residual throbbing (which I assume is endo since my period is late and won't see to start)

To help delay lesions I was offered mirena while having the lap but I am not keen I'd prefer a pill as if side effects can just stop. Plus I've heard horror stories from a friend whose coil migrated. Anyone here on progesterone only pills?do you find they help with pain and prevention?anyone who has been on them and needed repeat surgery/ how long after etc?

Finally ongoing care I have a recheck privately in the next few weeks. But after spending £8000 privately and not being able to work I want to go back to nhs where possible. The surgery that they had booked for 26 August is with the endometresiosis specialist for this area.I want to see him.What are your experiences of waiting times for nhs endo specialists?

Any other tips or stories of how you lovely people have been managing physically and psychologically with this?

Love

Sabrina

[Lindle]

I'm so sorry for what you have gone through - it really in beyond belief that people are still being ignored in this way until endo has become severe. There are so many missed opportunities that could have not only save patients such suffering and personal financial cost but also the inevitable strain on the NHS that is involved with treating severe endo.

There isn't much firm evidence of post lap medical treatment preventing recurrence, especially when severe, it is usually given to prevent recurrence of symptoms which might not be the same as recurrence of the disease itself. Hopefully others can share experiences. This is covered on page 115 of the ESHRE guideline (full guideline) under 'IV.1.b. Medical therapies for prevention of recurrence':

eshre.eu/Guidelines-and-Leg...

You are doing really well to be almost pain free after just 8 days - it can take a lot longer. The first few periods can be very painful after such extensive surgery and isn't necessarily a sign of endo being left behind. That is one of the reasons for post lap medical treatment - to prevent periods which can be so painful.

Unfortunately you won't get to see a specialist in an endo centre on the NHS for a follow up as you aren't in that system. Treatment in endo centres for severe endo is under tertiary care for highly specialised conditions and is a 'package' that includes initial referral/consultations, any scans needed, surgery and post op care. You would only be eligible based on recurring pain at a later date. Let's hope you don't need it but if at some time you do experience a return of pain you will qualify for referral to a centre as someone with a history of severe endo. Your GP can refer you under the NHS England treatment specification page 6 that says:

'Referral

Patients with known severe disease, which has not been adequately treated or has recurred, are likely to be referred by primary care clinicians'

england.nhs.uk/wp-content/u...

[Sabrinacolada in reply to Lindle]

Thank you kindly for your reply. It has genuinely been so helpful. The links sent already have been of great use. I feel like I was just diagnosed and have been using research papers to learn more. Was told have the mirena but not much about if this is more pain management or the progesterone can suppress to some extent but these resources you've sent explains more about management.

Yes I did suspect that now the surgery is done I will not be under the care of nhs/ follow up by an endometresiosis specialist centre. I will just see how I get on by thr time I have the private consultants recheck. Its mostly throbbing on and off but every so often a stabbing vaginal or rectal pain. But I can manage with ibuprofen prior I was on oxycodone with limited effect and wasn't sleeping.

I think I am just so anxious it will or has invaded the bowel or bladder but at least I have the diagnosis now to deal with it and hopefully GPs won't be as dismissive.

Thanks again,

Sabrina

[Lindle in reply to Sabrinacolada]

If you do have further concerns after a few months there are private ultrasound centres that specialise in detection of deep endo and they can see if there is any deep endo left behind. Will pm you later. Am just going out. x

[Sabrinacolada in reply to Lindle]

Hi, sorry to come back again but it got worse rather then better! was wondering if you know of any specific gynae specific imaging places you could recommend? I am based within Essex but don't mind travelling. Or just ways I could find a trusted one.

I had Ultrasound 3 times which missed endo completely but that was via nhs so I am not a fan of this imaging medium ( although aware limitations of who is performing the scan/ interpretation). For DIE diagnosis I have read regarding specialist mri and have been looking at actual imaging differences ( I am a vet so I overthink and look possibly too far in depth which makes me stressed!) The private hospital I had the lap says gynae mri but not sure if just general or specific enough for this. Any tips?

I am due my post op check with the private surgeon which they are supposedly calling to arrange I can also ask him. Thanks for any help.

Sabrina x

[Lindle in reply to Sabrinacolada]

I'm so sorry I didn't get chance to message you before . Yes I have list of experts in ultrasound and MRI and will message now.

[Sabrinacolada]

OK thanks lovely. That's a fair point. I had asked the surgeon if based on the external appearance of the bowel did he anticipate damage ( I have had constipation and now very thin stools over the past few weeks and now have been opiate free 5 days. Also have a weird rectal stabby pain which I haven't actually had presurgically). He said the bowel looks fine and suspected the results of ongoing opiates then all the laxative to compensate. Neither him or thr GP seem concerned so hopefully they are right. Its a fair point though if no better I could also pay for imaging to assess for deep lesions ( hope I don't have to and its fine).

[Cactus0724]

Hello. So sorry you have had to go through such an awful time. I’ve also had to go private due to wait times and have my lap in September. In the mean time I have been put on the pill Cerelle and honestly I feel so much better for it. I know it’s probably just masking things but to not have the agony I had when i was on my period is such a relief xx

[Sabrinacolada in reply to Cactus0724]

Thanks for your reply. I am glad the pill is making it more manageable for you. Sorry as well that you have had to go private due to the wait but it was a great decision in my case for my physical and mental health.

I've just started desogestrel/ progesterone only pill yesterday so will see how it goes. The doctors all seem very keen for mirena but said I will try this first and have some time to recover and rediscuss it at my check up. I wish you the best of luck with your laporsopy 🙂 xx

[Cactus0724 in reply to Sabrinacolada]

Hope all goes well with the pill for you too! I know it doesn’t work for anyone but anything’s worth a try to be as pain free as possible! Aww thank you, I’m a bit nervous but know I’ll feel better for finally having some kind of diagnoses.

[Sabrinacolada in reply to Cactus0724]

Yes of course any surgical procedure/ general anaesthetic is scary. I was terrified of what they would find but relieved in some respect that at least I would know more to find a way to treat or cope with whatever was found.

The surgery itself they said went smoothly, everyone at the private hospital was brilliant. The pain post operatively in my case was no worse then what I had pre op. But bloating wise I looked pregnant which is normal given they fill the abdomen with gas for it. I was able to walk to the toilet briefly around the room a few hours even post operatively. I have gradually built up activity/ walking more since.

I'd honestly say it was far less scary then I had imagined. Although the diagnosis was sad in my case I am relieved he could move the adhesions to hopefully limit further complications to other organs but also pain wise its already far better now even 9 days post op.

But either way you will be absolutely fine. Best of luck I hope it all goes smoothly and nothing too dramatic found etc xxx

[Cactus0724 in reply to Sabrinacolada]

Thank you so much for the reassurance! I have heard the wind pain is the worst part! Will be stocking up on peppermint tea. Thank you and I’m so glad all went well for you. Like you said not a good diagnosis but at least finally a formal diagnosis which is somewhat reassuring. I hope you feel better soon x

[Sabrinacolada in reply to Cactus0724]

Yes quite bloated after but does subside. Also it presses the diaphragm so had some shoulder pain which I was prior warned of. I found it bearable I think it was the first night I struggled to sleep but the gas feeling generally subsided within 24- 48 hours in my case. As I said bearable and completely worth it for a diagnosis x