How effective are the different diagnosis tools for endo? I currently have a 'potential' diagnosis of endo based on symptom pattern and a pelvic ultrasound whereby the transvaginal scan showed reduced movement of the ovary on one side compared to the other. I would rather not have a laparoscopy surgery if I can avoid it. Is MRI a good non invasive diagnostic option?
What is the best management for potential endo? I am going to try naproxen pre-period to reduce pain (menstrual pain is my main symptom). I also plan to start on the progesterone only pill with the aim of reducing any endo growth and making my periods lighter. Has anyone tried the coil? I'm pretty keen on my sport and being in a high progesterone phase all the time isn't ideal for maximising training gains! I also would like a family one day so keen to prevent any further progression.
I'm pretty keen to throw the kitchen sink at this (so to speak!) so have also gone veggie to reduce inflammation systemically, and doing lots of yoga etc.
Thank you in advance for your time
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Cyclingchick
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Hi Cyclingchick,I understand the kitchen sink approach.
It sounds as though you've sussed that you're likely to have endo.
For hormonal treatment, the aim seems to be to suppress periods. I was trying the Mirena coil because it provides localised delivery of hormone with lower side effects because it doesn't go through digestive system. It greatly reduces period bleeding by reducing the amount of lining produced each month. However, it suppresses periods in about 20 per cent of women by the end of the first year, so GP suggested a "top up" with the mini pill Cerezzette to try to stop periods.
I found the mirena comfortable and have no problems with it. Cerezzette is ok, but in the first month I felt blue and had some acne. That's lightening up two months in. Maybe the Mirena & mini pill combo is something you'd like to try.
In my case, my endo symptoms are strong, so I went for a diagnostic laparoscopy with an eye to planning excision surgery for the endo. I will need a follow-up MRI scan, then the surgery with a multi-discipline team to treat the endo (i.e. remove it).
So, if your symptoms are mild (and you're ok with them), you could hang tight with pain relief and hormonal treatment. If your symptoms worsen, you may want to ask for a diagnostic laparoscopy.
The only formal diagnosis for Endometriosis is an actual laparoscopy with a specialist. Sounds scary but most of these things can really only be diagnosed and assessed by actually taking a look. Quite often an experienced specialist will remove anything odd and take biopsies all in one operation. General gynae may be a waste of time as they'll often only look at the uterus, ovaries and tubes, quite often endometriosis is in other places like on the bladder and bower or inbetween, so you need a specialist. You should be able to ask to be referred to a specialist. Also general gyane tend to want to try the coil or hormones, as to them hormones are a form of treatment, whereas they are forms of management.
Symptoms for endo don't correlate to the severity; so some women can have a lot of endo and very little symptoms and some women have a little bit of endo and lots of symptoms. This makes it difficult to treat and plan accordingly when you don't know what's going on inside.
Ultrasounds and MRIs amongst other scans don't often show endo although they can show:
AdhesionsScar tissue
Organs not in the correct places
Fibroids
PCOS
Cysts
So they are good for ruling out / identifying other problems, but shouldn't be used as a diagnostic technique for endo.
Hormones may slow any of the above conditions growth but will not stop them, it may however give you time to think about what you want while controlling the symptoms but they have their own side effects.
It's worth considering that endo requires oestrogen to grow, as we all produce oestrogen, endo will continue to grow. As it does it can stick organs together, cause more pain, infections, spread and perforate organs. Surgery is required as a form of treatment (laparoscopy with excision is the best), some women need multiple surgeries, some only need one, some need one and then hormones, it really depends on your own body, so it's really unique to you. It's worth having a diagnostic lap with excision early to reduce your endo and then allow you to see what your new normal is like and consider hormones if and when you do need them to manage your endo. Hormones now would be okay but they'll just mask the growth and so you won't know really how bad it is until you come off the hormones (which is what happened to me). It's good to have at least a diagnostic lap with biopsies so they can see where it is, how much and what it's doing, then you'll have a better idea of what will work for you.
A few places to look:
The NICE Guidelines for Endometriosis has a pathway NHS gynae should be using to diagnose, you can find lots of other conditions on the NICE website too. It's worth getting familiar with what to do and what should happen.
nice.org.uk/guidance/ng73
Check out the Endometriosis UK website for all things Endo. This would be good for finding out what to do next, and how to look for consultants, operations, hormones etc.
I know it's not quite what you wanted as answer, but there isn't no cure all / fix for this condition but with surgery, pain medication, adapted exercise and diet to suit each individual we can manage. You shouldn't have to be in pain and shouldn't need to take things to mask the symptoms especially when those things could make the symptoms worse or have their own side effects.
By the way I love exercise too so I see where you're coming from! I do pole fitness, aerial silks, aerial sling and gymnastics rings. Endometriosis hasn't stopped me doing those; I just need to listen to my body and take it easy on flareup days, take a few weeks off for an operation, and physio post operation (I find that helps ease the muscles) then back in as normal
Hi, I definitely agree with throwing everything you can at endo! I found changing my diet helped my symptoms along with activities to keep stress down like yoga, breathing exercises, getting out in nature etc.
Really helpful to hear about the different ways to manage and diagnose, I guess I was thinking that hormones might be treatment although it sounds more like they will be for management.
I also did not know that you can take the mini pill alongside the coil so I might speak to my doctor about this too.
I did have a look at the NICE guidelines (I am a soon to be physio so these are our bread and butter!) and it sounded like a laparoscopy was recommended more if the initial trial of pain relief and hormones was not effective. This supports what my doctor has suggested so what I might do for now is trial for 3 months management with hormones, naproxen around periods, and diet/exercise modifications (I am a cyclist so there is often an emphasis on pushing more but I've added in yoga and generally upping the relaxation too!)
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