Feeling Lost and Frustrated

[jadielane92]

Hi all,

Long time reader of the forum but first time poster. I was wondering if anyone had been in a similar situation and could provide any advice. My apologies, this may be a long post.

I had my first period aged 11 and every period since has been horrific, heavy, so painful I couldn't concentrate on anything and affected my bowels and a general unwell feeling every time.

I'm now 31 and haven't had a period in 18 months. I've had a transvaginal scan which showed up ovaries which were far smaller than they should be, no follicles in view but apart from that it was 'normal'.

I got referred after years of complaining to a consultant in the endometriosis service and was so looking forward to that appointment after I'd waited so long. He read through my questionnaire which was given to me prior to him calling me in and then spent literally 3 minutes total with me. He dismissed everything I said and told me he couldn't say anything until I'd had a pelvic MRI.

I waited for 5 months after seeing him before I badgered his secretary to see when I was having an MRI and how come I hadn't received a follow up letter from clinic with what we discussed, etc. I finally had the MRI in February this year and I'm yet to have any sort of appointment with the service.

I was supposed to have a call from the endo nurse and she didn't call me, I was then booked in with him in July and on the morning of, it was cancelled by them due to an emergency.

After dealing with the most horrific issues since I was 11, 20 years later no-one seems to give two hoots that someone has had to deal with such pain and discomfort for that long. I've also been asked in the past 'are you sure it's not just your fibromyalgia?' as I have that condition too. It's honestly so frustrating and I feel so stuck with it all.

As I'm 31, I'm well aware of fertility and the ticking clock. I'm desperate to be a Mum but I can't do anything about it as I need my endo and fertility issues looking at before I can even bring it up in conversation.

Has anyone at all had anything similar happen to them or even any positive advice that they could share regarding endometriosis and waiting for a diagnosis?

Thanks all.

[white61]

I completely understand how you feel with not being listened to and waiting forever for any update etc. I’m so sorry you’re going through this, often we have to push for things to get answers as they just want to discharge us asap! I hope you get some answers soon

[jadielane92 in reply to white61]

Thanks so much.

It's a nightmare isn't it, the waiting just makes everything so much worse.

[Hidden]

The trauma we can experience from medical neglect cannot be overstated. Having to push and advocate for yourself can be very lonely. You can get this huge overwhelming feeling of grief that you just carry around, hopelessness, etc. It truly can be awful. Is this being pursued through an accredited endometriosis centre?

Sometimes it can be helpful to take your own actions in the meantime, as well as chasing this stuff up to keep it moving forwards. Are there other aspects of the condition you could help to improve for yourself in the meantime? It can give you a sense of control back. For example, are you prescribed appropriate pain relief? Do you have a stomach protector prescribed like lansoprazole or omeprazole for when taking NSAID pain relief? How is your sleep, stress, diet, hydration and exercise? Can you speak to your doctor about options to reduce the heaviness of periods, such as tranexamic acid? Are you monitoring your general health? Do you take any supplements? Do you drink caffeine or alcohol? Any care you take of yourself and your general health will also put you in the best possible place when it comes to addressing fertility or getting any surgery.

For me, reading up can make me feel a bit more in control. There's a great book I read recently called Bleed: Destroying Myths and Misogyny In Endometriosis Care. Also a spectacular book called Ill Feelings. x x x x

[Hopefulhann in reply to Hidden]

This is fantastic advice! It’s the managing it in the mean time whilst you’re waiting that can help. I’ve also found lowering the amount of gluten that I eat helps with my pain levels. Also taking pain killers the minute I get a twinge of pain to catch it before the inflammation gets worse and worse.

I had an awful experience at a hospital in Croydon, I was so dismissed (told I didn’t have endo). After I did some online research about hospitals I found out I was being treated at a rubbish one, I asked my doctor to change hospitals and although it meant another long wait - it was so worth it. I was then referred to another hospital and they were incredible. They found and removed lots of endo growths and discovered that I also had Adenomyosis during my laparoscopy. Then I was referred to a specialist endo nurse after my lap who has been so helpful. Xx

[Hidden in reply to Hopefulhann]

Yes! Some people find less gluten helps, or dairy. It just depends entirely on what works for your body. Personally that hasn't been the case for me, but one of my close friends is so much better without gluten and dairy.

And yes that whole process getting to the right consultant can take ages. It's a whole undertaking. It's also a strange time because we now have accredited endo centres, but that is not necessarily well known. With my own experience, I had surgery at the Norfolk and Norwich and believed it was an accredited centre... it turned out it wasn't accredited at the time of my surgery, it was only a couple of years later that happened. Which certainly explains why one of the consultants suggested I have a baby to cure myself. 🙄🙄🙄 The surgery I had did nothing for my symptoms and in hindsight it was obviously done by surgeons who hadn't had that extra training that they have in accredited centres. A few years later, going through the same centre while it was accredited... was a COMPLETELY different experience. So much more positive and informed. So it can change so much even within the same hospital. 😂 Great isn't it! haha aaahhh

[jadielane92 in reply to Hidden]

Oh gosh, I totally understand what you mean. When they tell you to have a baby to help- erm, I have absolutely no cycle to track and I'm in agony here! Haha. It can be so frustrating.

[jadielane92 in reply to Hopefulhann]

Such a wonderful response, thank you. Isn't it awful when you get dismissed like that? I think the gluten thing I will definitely look into, that's interesting that it can help. I've never considered that before. So glad you have some help x

[jadielane92 in reply to Hidden]

I cannot thank you enough for this reply. What a wonderful, thoughtful response. I've had a look and my local women's hospital is an accredited endometriosis centre so I was assuming to have a better experience.

I honestly don't think I'm taken seriously when it comes to pain relief. Despite my GP being wonderful, she never seems to want to prescribe painkillers and I feel I definitely could speak up more to advocate that I need something. I am on lansoprazole but my sleep and stress levels are affected massively. Sleep I struggle with mainly because of pain and stress is mainly from the pain so it's a lovely little vicious cycle. No caffeine, no alcohol, I monitor everything and have had tranexamic acid when I last had a period but that was 18 months ago now and no periods since.

I will absolutely look into that book, I love reading up on things and think that would help massively just get some perspective as to where I am right now.

Again, thank you SO much.

[Hidden in reply to jadielane92]

Oh no worries at all. So much of this stuff we can only find out from talking to other people who are going through the same thing. It sounds like you could have a big win here if pain relief was appropriate. There are so many options and combinations you can have on this front. For example knowing which drugs you can take together, the optimal timings and durations. I'll dump the info I know below in case any of it is useful:

- You can take three types of pain relief together - a paracetamol, an NSAID and an opiate based pain relief. You can vary the versions as needed. Things I have available are paracetamol, ibuprofen, migraine ibuprofen which is a bit stronger, mefanamic acid, naproxen, co-codamol (paracetamol and codeine), dihydrocodeine (which i take very rarely, but did have to take quite a lot after surgeries). There are lots of other options beyond this. I then take what's needed at different times. Typically I'd start with paracetamol if it's feeling low level and nagging. Then just escalate from there as needed.

- You can space out doses, if possible depending on pain, for maximum effect. So paracetamol at 8am, 12pm, 4pm, and ibuprofen at 10am, 2pm, 6pm as an example. Obviously depends on which painkillers you need, but this way of layering can really help manage pain better.

- You should have access to a pain management clinic as part of the NICE guidelines for endometriosis. You're entitled to access this service. It may be worth looking this up and speaking to your GP about it.

- I've found it helpful to go to a GP about pain, with notes about how frequent the pain is, how severe, how it affects my ability to go about my day, and impacts on mental health. Look up the pain scale and this can be used to rate your pain from 1-10. It's not perfect, but it's a way of communicating severity. Let them know what pain relief you have tried and the effect or lack of, it's had.

- NSAID pain relief like naproxen, ibuprofen and mefanamic acid can give you the best effect over a few days. So it can be taken to get on top of a flare that is going on. For example I can get weeks where the pain is on and off and nagging, and just keeps coming and going. Sometimes 2-4 days of regularly taking the NSAIDs can just get right on top of it and settle it down, whereas just putting up with it or just taking the odd dose of pain relief could just leave it lingering on for weeks.

Pain is so bad for mental wellbeing, resilience, mood, motivation and general quality of life, and no one should put up with it when there are so, so many options that exist!

[jadielane92 in reply to Hidden]

Wow, this is so incredibly helpful, thank you. I've been to a pain service at my local hospital a few years ago for pain for my fibromyalgia but I found the consultant very dismissive and took me off my co-codamol which used to help me so I was left to find other options.

But all of this info is fantastic and I will definitely use this as a guide to see if this can help me. I will also certainly speak to my GP and give her a pain diary to see if that assists me any further.

Thank you again, so much, it's so appreciated.