Adenomyosis · Endometriosis · Pain

My Glimmer of Hope Inside the Pain Clinic

velizar-ivanov-737386-unsplash.jpg

After my third laparoscopy for my Endometriosis, it was discovered that I also suffered with Adenomyosis.  I experienced a loooong operation and had multiple complications in recovery, and it comes as no surprise that I was admitted and stayed overnight.  Pain was an issue pretty much as soon as I woke up, but the *mostly* amazing team around me helped me manage that.  It wasn’t until I was reviewed by my consultant the following morning that I came to realise that the pain I had been experiencing leading up to my operation – and to some degree after – was going to be with me for the rest of my life.

My options after my third laparoscopy were minimal.  I’d undergone multiple operations over the last 3 years (not just for my Endometriosis) and experienced all sorts of vicious treatments that it was kind of relieving to know I didn’t have to face a concoction of medication or other invasive treatment.

Instead, I was faced with the following;

  1. Get pregnant.  Not because of the myth “pregnancy cures Endo”, but because it then meant the sooner I’d completed my family, I could have a hysterectomy
  2. Have a hysterectomy now, without having children
  3. Go back into the medical menopause, only this time it would be pretty much for life

As in turns out, none of those options were actually suitable.  We’d recently discovered that there was a chance I had a genetic blood problem which left me at a high chance of a blood clot, meaning until I had specialist tests to give me an answer hormones were a 100% out of the questions (and, as I’ve now found out, even if my tests are negative, I’ll only ever be allowed to have the menopause hormones and nothing else).  Having a hysterectomy in the very near future wasn’t possible either, as we were due to get married in 2 months and I wanted to enjoy the build up to it and the time as a newly married couple.  This also meant that having a baby wasn’t the right thing either.

So, my decision was made for me – they referred me to the pain management clinic until I had a clearer answer (and yes, I was warned the longer I took to make a decision the quicker my Endo would grow back).

Yesterday I headed to my first appointment.

The lead up to my appointment had been a bit of a downer.  The referral process took a lot longer than it should have done, the receptionist booking my appointment told me how unusual I was being a young patient and for having a referral that was not a back or joint problem, and many other healthcare professionals kept telling me how unlikely it was that it would be of any help.

Thankfully, things picked up when I attended my appointment.  Despite being located in the most grubby part of the hospital (picture low ceilings, long and old corridors to get to it), the consultant made me feel at ease and was involving my husband as much as he was me.

He asked me all about my pain, what it felt like, what the normal pattern of it was and was it accompanied by anything in particular.  We talked about my recent load of cyst ruptures, how it was related to my menstrual cycle and whether I had noticed any changes in it.  The consultant was also quite educated about Endometriosis, and had clearly taken a lot of time to read my complicated history.

After his “assessment”, he concluded that the pain was indeed related my Endometriosis and Adenomyosis, rather than just being “pain from sensitive nerves”.  He did think that the pelvic nerves that had been damaged through my first and second surgeries and the Endo scar tissue were playing a part in it too, but that they were firing signals to my brain because there was actual disease and tissue there, rather than just being “always on alert”.  This was incredibly reassuring, because as you may have read from my last few posts or Instagram stories, a lot of GPs I have seen have insisted that whilst I do have Endometriosis and Adenomyosis, my pain was not coming from this, but from the chronic pain element only.

The consultant, although not a gynaecologist, did have the conversation with my and my husband about whether or not we were thinking of having children.  When this sentence first came out of his mouth I was preparing myself for a bit of a battle – I am a bit sick of healthcare professionals telling me when to populate the earth – but he handled it with such sensitivity my husband and I were able to have a decent discussion about it.  Ultimately, as with my specialist gynaecologist, he thought a hysterectomy was the right answer, but not right now, so had a few tricks up his sleeve to help me manage up until that point.

I came away from that appointment with a fair few things to try and help the pain settle;

  • an addition to my medication – an antidepressant to use alongside my neuropathic pain relief.  Both long acting pain relievers that work slightly differently but well when used together
  • advice on the best way to use opioid medication, specifically morphine
  • considering changing my short-acting morphine to a long-acting one
  • management from other members of the team (e.g. psychiatrist, CBT, exercise)

To some of you reading this, you may be thinking that the outcome from my appointment is minimal or perhaps not what you expected, but for me it was huge.  I had someone validating and confirming my pain and offering to help without hesitation.  I had contact numbers to use if I ran into problems and my future follow up appointments were easy to access.

And despite me initially feeling hesitant as to what this service could offer – and the expectations of others – I was so pleased I went and would recommend the pain management service to anyone who is suffering with similar problems.

My Advice for Getting To and Through a Pain Clinic Appointment…

  • If you feel a referral would be beneficial, ask your GP or consultant – it’s unlikely they’ll say no if your condition or main presenting complaint is pain.  And if they do say no, ask for a second opinion or see if your local clinic accept self-referrals
  • Do your research on the clinic – some will have specialist pain consultants that work with joint problems only, back pain only or other conditions.  If there is one you’d prefer to see, just ask the receptionist or person booking the appointment
  • Prepare to answer a lot – and I mean a lot – of questions regarding your pain.  For some people, this is really overwhelming and tiring.  Most initial appointments will be a lot longer than follow ups to allow time for this
  • Keep a pain diary before hand.  I’ve mentioned in my previous articles about how writing things down before an appointment can help make sure you get your problem across and remember to ask important questions – the same principle applies here!
  • Make sure you understand what you are being told or advised, especially as some information about pain can be complex
  • Remember to take a list or prescription of all the pain relief and doses of pain relief you are taking.  This is vital information the pain specialist will want to know, and even thought it is likely it will have been provided in your referral documents, it’s still good to take an extra copy just in case.  Make sure to include any other pain relieving methods too, such as heat or massage
  • Take someone with you to the appointment if you feel you need it – the first appointment is often quite a lot of information and questions, so don’t be surprised if you find it hard to take in.  Having the support of someone else is really useful in remembering what has been discussed and what questions you need to ask
  • If you’re not happy about any medication that is being advised, speak up!  There is no point having a medication prescribed that you aren’t comfortable taking, because the likelihood is you won’t take it
  • A lot of management about pain and chronic pain focuses on the psychological element.  Remember, this is is no way telling you that what you are experiencing is in your head, it’s just another method of managing it.  Give it a try – you can always opt out if it’s not for you
  • Allow time for change to take effect, as it’s unlikely that any changes to medication or other management techniques will have a result immediately
  • If you’re struggling or the management techniques are not effective, make sure you let your consultant know so they can continue to help you.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.