unsure of what to do next

[Yupithurts]

Hello everyone,

After some advice from you lovely ladies , really unsure and a bit worried, so a bit of a back story … sorry long winded I know.

I was diagnosed with endo in in 2008 after my hubby and failed to fall pregnant after trying for 4 years. I have had painful and heavy periods from day one. This was always dismissed as just period pain blah blah so I stopped going to doc about it and just self medicated to control pain etc.

anyway i have had two laparoscopy , first in 2008 when diagnosed and they removed scare tissue, unstuck my ovaries and and general tidy up to help improve fertility. My second was in 2011 after at our ivf consultation I mentioned that the pain had got much worse. Luckily my specialist was great and gave me ultra sound there and then and discovered a massive growth in my right tube ( he actually uttered the words what the fu*k is that 😂) and further cysts on both ovaries! Surgery within 4 weeks and a removed tube and repaired and drained ovaries and more clean up. Then our first and only round of ivf a few months later, this was thankfully successful. We count our blessing every day !

so I never like going to the doc anyway I really don’t like to bother them , so have basically been managing my endo since with pain meds and other coping mechanisms.

that was until the beginning of first lock down when I felt a change , pain meds stopped work , bleeding got worse etc. hubby forced me to cal l 111, crying and throwing up on the floor was probably the kicker, so I thought maybe a cyst had ruptured, guy on phone was useless but eventually agreed to me having an emergency ultrasound , 12 months later finally had my “ emergency “ scan . This confirmed cysts so was referred to hospital, saw specialist , he wanted to do mri before deciding my options. Finally had mri in sept 2022 ! Thank god I was a priority 🙄 or god know how long I would have waited. Results came through in oct :

“I have just seen site of your scan. This shows you have two endometriomas within the left ovary at 3.5 cm and 1 cm and this ovary appears stuck at the back of the womb. In addition, there is a 1.8 cm right-sided endometrioma again which is stuck to the back of the womb into an endometriotic nodule. The uterus

appears effected by adenomyosis and there is suspicion of some fibrosis within the rectovaginal space. I am going to put your case through our endometriosis MDT to plan any surgery that you need and bring

you back to clinic to undergo the formal consent process and be added to the waiting list . “

Sorry it’s such a long post, my question is I still haven’t heard back or been given an appointment, wasn’t expecting it this soon but I’m in a lot of pain , periods even heavier if that was possible , have nausea, feel so tired all the time should I see my G.P or wait ? Like I said I don’t like waste their time etc especially now as I know they’re a back log etc .

Also does this mean I have stage 4 , what type of surgery will I need , I’m expecting to be advised to have a hysterectomy but will it be straight forward , I understand some of the terminology but not all. Has anyone else had similar results etc. would be grateful for any info or advice.

In 42, not wanting any more children , currently take naproxen and dihydrocodeine and paracetamol to manage pain.

Sorry again for the long post .

[Moon_maiden]

Hi

Don’t apologise for length, you’ve had a hard time.

Chase with the consultant secretary, with everything going on you have to make yourself heard. It’s not easy I know, I’ve given caring what they think these days, my record is not pretty 🤣

Ask GP for better pain meds, if you can afford it you can get cannabis privately, consultation is around £50 with most clinics.

You need to be as pain free as possible.

[Yupithurts in reply to Moon_maiden]

hi sorry for my late reply just seen u had replied to me. I’m going to give the consultant/ hospital a call tomorrow. I live in the uk so I don’t think I can get a prescription for cannabis ( wish I could , save me a fortune) and it does help with nausea and a little with the pain. Thanks again for your reply x

[Moon_maiden in reply to Yupithurts]

Hi

Don’t apologise, life gets hectic with this. Let us know how you get on 🙂

I’m in the UK, it’s all private for cannabis at the moment, the consultation costs £50, plus same for follow up after initial meds. It cost me £50 for 10ml CBD and £30 for THC. I had a 30ml bottle of THC for £80. I think they may have recently put med prices up. I bought a cheaper CBD, they like you to have both, but the oil isn’t the same quality. PM if you want further info.

Good luck with chasing up info 🙂

[Cailleach]

I would agree, call the Endo team to whom you were referred or get your GP to write giving an update and requesting you be seen urgently. Unfortunately I think waiting lists are long at present in most areas.

It would be worth asking your GP to review your pain meds as they are clearly not working very well for you. Nausea could be due to the dihydrocodeine, though that is something for you and your GP to work out together.

Hope you hear from the endo team soon and get some effective help x

[Yupithurts in reply to Cailleach]

thank you, or you’re reply.

Getting any doc appointments round here is a nightmare, but I just Google the hospital I’ve been referred to and found a number and an extension see what they suggest re pain. I suspect I’ll be waiting a whole for surgery. Thanks again for taking the time to reply x

[CeCeT]

Hi,

Unfortunately you have to fight every step of the way. After unacceptable treatment by a doctor and an 11 hour wait in A&E, I contacted PALS at the hospital. They asked me to email them everything that had happened, after that someone called me to apologise and got me an appointment the next week with a different doctor. Now every time an appointment gets cancelled or waiting for an operation date I call her.

I know the NHS is in a bad way, but doesn’t excuse how doctors think they can fob people off, and gaslight.

I hope you get somewhere today with them, good luck x