Rapid onset endo?

[SparklePig]

Hi everyone,

Has anyone else experienced a very rapid onset of endo symptoms?

I had fibroids removed in April 2019, at which time there were no signs of endo. In March 2020 I went to A&E with extremely painful cramps. Scans showed a 4cm mass, and it was diagnosed as a degenerating fibroid. In September this year I started bleeding heavily and became severely anaemic, so had another hospital trip. That led to another couple of scans (ultrasound and MRI), which showed that the mass has grown to 9cm and is most likely an endometrioma. I have no prior diagnosis of endo, and, aside from the one period in March, no history of pain.

Since the scans, I have started to experience pain in both my bladder and bowels. In both cases, the pain is when I need to go to the loo and feels like the horrible pain I had in March. I am also finding I need to pee every hour, sometimes more regularly, even through the night.

I have been referred to an endometriosis MDT and am waiting for a follow up appointment and treatment plan, and taking Zoladex in the interim. During this waiting period, I am getting really concerned about how rapidly my symptoms seem to be progressing. Has anyone else experienced such a fast onset of symptoms? Can you offer any advice or reassurance? How do I manage this while I wait for a treatment plan?

[Moon_maiden]

Ask GP for decent pain relief or urgent referral to the pain clinic. Do push for decent advice, don’t let them fob you off. You do need to take it regularly to benefit. I’m not sure mine is rapid, but made it to 50 coping with bad period pain. Then started to go downhill mainly around year and half ago, but some symptoms longer. Lap Feb confirmed endo, numerous fibroids and enlarged uterus. Hysterectomy this week and turns out adhesions all over the place, loads of fibroids, rectovaginal endo. I couldn’t sit or stand for long for over a year.

[Chloelouise92]

I experienced quite a fast onset of symptoms to be honest, no link to anything so I literally had a bout of water infections which started December 2017/January 2018 I then started getting back pain so thought I’d got kidney infection went to doctors and it wasn’t that but was given antibiotics anyway to see if it cleared up. Since then have just got worse and worse with tons more symptoms. After a few months of worsening symptoms it progressed to being in constant daily pain and unable to walk properly, which to be honest I’m struggling with a lot. I was diagnosed in august this year after having a lap with deep infiltrating Endo and I’m actually booked in for 7th December removal of the Endo.

I don’t really understand how symptoms just come that quickly but maybe because I’ve been on the pill for so long it’s been masking symptoms for years I don’t honestly know? I did have my gallbladder removed 4 years ago as well because I used to get a real sharp stabbing pain just under my breast bone, I still get it now but not as often as I used to. Although I’m never sure if it’s just because I’m always in pain now with other areas I just don’t notice it as much! I think that’s probably linked to the Endo as well to be honest.

I’ve found this forum really useful, I’m sure somebody will be able to help you manage it well until you are seen. I was prescribed naproxen and on another occasion amitryptiline neither of which touched the pain. Tried cocodamol and that was no good either. I’ve not found anything that will touch the pain for now but it may work for some! Hope you get some help soon 🤞🏻 X

[Chloelouise92 in reply to Chloelouise92]

I forgot to add the point of me mentioning being on the pill are you on the pill? Apparently they do usually suggest this as it is supposed to suppress symptoms whilst waiting for an alternative x

[SparklePig in reply to Chloelouise92]

Thanks for the response. Your situation sounds incredibly unpleasant and I’m sorry you are struggling to much. It is reassuring for me to hear that I’m not the only one for whom this has been so fast though. It must be very tough to have to deal with that level of pain so suddenly.

My hormones have been a mess for a few years. I was on HRT for six months before the fibroids were removed, then on the POP (I can’t take estrogen), then I had a Mirena fitted. My body rejected that when the heavy bleeding started, at which point I started taking a double dose of the POP plus three doses of another progesterone called norethisterone every day. They started me on Zoladex when that combination didn’t control the bleeding! So, in short, it seems that neither the pill nor the IUS were able to help my symptoms.

[Chloelouise92 in reply to SparklePig]

Yeah it’s crazy how quickly it all came on! It will almost feel strange when I’ve had the op and hopefully I can get back to some level of normality 🤞🏻 It completely takes over your life really! Have you had a laparoscopy? Or are they suggesting you do? I mean I can’t claim to be an expert but surely if they think you have that then it’s only fair that they treat it rather than just cover it up with some form of medication! I really hope you get somewhere 🤞🏻 X

[SparklePig in reply to Chloelouise92]

To be honest, everything is a bit weird. My endometrioma isn’t “normal” -apparently it is in a weird place and not associated with the typical symptoms. Because I was first seen in a&e, my care pathway is a little messed up. I have now seen a gynaecologist, but she isn’t sure what to do with me and has referred me to an endo MDT. I see a consultant in 12 weeks or so and I fully expect them to suggest a lap.

[Chloelouise92 in reply to SparklePig]

I asked for a lap in the end even though the Endo specialist that saw me told me it wasn’t Endo because she’d done an internal ultrasound. Obviously it turned out to be deep infiltrating Endo! That’s strange isn’t it but by the sounds of it so many people suffer in such different ways. My sister in law had totally different symptoms to me but she had it as well it’s such a strange one. Hopefully that will be the outcome for you 🤞🏻 I would say if they don’t suggest it maybe you should, sometimes the only way to get anywhere is be your own advocate! X