A Guide to Endometriosis
- Emily Duffy
- 3 days ago
- 14 min read
Updated: 2 days ago
After my latest laparoscopy I wanted to create a blog post on endometriosis (endo) in more detail around what it is, it's impact through symptoms, diagnosis process, and how to manage it. So here it is!
** I use personal examples in this post, so if you are a client and/or just don't want to know about my experience I have put these in italics and purple so you can skip them :) **
Content:
What is Endo?
Endo is a multi-systemic inflammatory disease which can affect the whole body. The understanding of exactly what endo is, it's cause, and how to treat it is still developing but it has come a long way since being "a period disease".
Some facts about endo:
It is estimated that 1 in 10 AFAB (assigned female at birth) people have endometriosis
Diagnosis can take on average 8 years.... (it took me 17 years for an official diagnosis even though it was "suggested" from other procedures years before)
Endometriosis is similar tissue to the endometrial lining of the uterus, but it is not the same.
It can grow anywhere in the body and whilst rare(r) it has been found on every major organ in the body!
It doesn't just cause symptoms during someone's period but can impact day to day life no matter where they are in their hormonal cycle.
Again, rare, but endometriosis has been found in cis men and also in fetuses - https://www.healendo.com/blog-1/2025/9/10/endometriosis-for-men-why-understanding-this-rare-condition-for-men-matters-for-women-as-well
It mimics cancer in that it spreads, attaches to, and damages surrounding tissues in similar ways to malignant tumours - though endometriosis is benign and not cancerous.
It can create its own nerve endings, blood supply, and hormones (which it feeds off of).
A recent study suggests endo is molecularly heterogeneous which means that it can be different at a molecular level, i.e. there are different types of endo! So a treatment that works for one type won't necessarily work for another.
Endo is often co-occurring with other chronic illnesses such as EDS, POTS, Fibromyalgia, Adenomyosis, and others. There is also risk of co-occurrance with ADHD.
A hysterectomy is NOT a cure for endometriosis, it can still grow back.
What is endo like to live with?
This can be so different for each person, so I will give a general overview and then some personal experience for this.
Endo can be categorised into stages. Stage 1 to Stage 4. Essentially:
Stage 1 (minimal) - a small amount of lesions mostly in the pelvic region. The lesions are quite shallow and haven't formed adhesions
Stage 2 (mild) - a few more lesions that are more set and may have minimal adhesions and scarring
Stage 3 (moderate) - may have spread beyond the pelvic cavity. Lesions are more visible and deep
Stage 4 (severe) - often called deep infiltrating endometriosis as it has infiltrated tissue. Often there will be adhesions between organs and outside of the pelvic cavity.
The staging can differ slightly depending on who you see! But it is important to note that the staging doesn't translate to the symptoms i.e. you might have stage 1-2 endo but have debilitating pain 24/7 whereas others might have stage 4 endo and experience minimal pain.
Symptoms that may be experienced:
Pelvic pain (dysmenorrhea) - this is often reduced down to period cramps, but it isn't just period cramps. It can be intense period pains throughout the hormone cycle and can be different types of pains too.
Heavy periods (menorrhagia)
Leg pain - sometimes endo lesions can affect nerves and cause leg pain
Headaches and migraines
Anaemia - due to blood loss or low absorption
Bloating - due to inflammation
Gastro issues - this is often confused with IBS. A lot of AFAB people get diagnosed with IBS when actually it's endo. Endo can cause diarrhea, constipation, bloating, pains, etc.
Nausea
Pain with sex (arousal, penetration, orgasm, and afterwards)
Pain with bowel movements or urination
Increase chance of UTIs
Pain with ovulation
Fatigue
Infertility
In some cases shoulder pain, chest pain, higher heart rate, blood in urine or stool depending on how progressive the lesions are and where they are.
Endometriosis can impact someone 24/7 or it can be something more minor but impactful. The days of having intense period pains and being told "that's just a period" are coming to an end though as more awareness is being raised.
It is useful to track your periods each month along with your symptoms (every day not just when bleeding) so that you can have an idea on if there are any cyclical changes to your body and symptoms. Do be careful if you use an app for this though as to what they do with your data!
My experience of living with endo....
I have had horrific periods since I was at school age. I would be doubled up in pain unable to move, I would have irregular periods so I was bleeding every 3 weeks rather than every 4, and my periods were so heavy I would leak through any "hygiene" product that in the end they made me so anaemic (my GP said it was one of the lowest iron levels they'd seen!). The solution - I was put on the pill.
Even with hormonal treatment my periods were a nightmare, I was getting stomach issues all the time (which were put down to IBS and anxiety) and by the time I was in my late 20s early 30s I finally made a bigger push to get looked at for endometriosis.
Diagnosis is such a difficult thing to fight for with endometriosis and the waitlists are just growing and growing too. I have experienced ALOT of dismissal and gaslighting. Even after a diagnosis I saw a gynae as my symptoms had returned 8 months after my ablation, and I was told: "I was asking for a miracle" when asking about what I could do for pain management, yet in the same spin my pain was psychosomatic and I "should try talking to someone about it". He also told me another laparoscopy wouldn't be worth it. Well let me tell you folx, after going back to my GP and getting referred to a specialist, I've had my recent laparoscopy where they found "lots of endo".... So even with a diagnosis of both endo and adeno I was told my pain wasn't physical and that I was asking too much even though I knew something wasn't right!!
Diagnosis and Laparoscopy
Currently the "gold standard" diagnostic for endometriosis is via a laparoscopy, which is key hole surgery of the pelvis, however I will talk through different ways it might be investigated and diagnosed before moving onto a more in depth look at laparoscopies! Investigations:
Ultrasound - often internal ultrasound might be done to try and detect any cysts or endometrial lesions (this is how I found out I had adenomyosis too).
MRI - often an MRI is done to get a better image of what is going on in the pelvic region. A lot of doctors go by the MRI but it is important to note that:
MRI's are around 75% effective at picking up endo (different studies suggest anywhere from 60+% effectiveness)
It is also dependent on the radiologist doing and reading the scan
Often superficial/mild endo doesn't show up on MRI scans
https://www.sciencedirect.com/science/article/pii/S0015028203001559
Some "experimental" investigations are becoming available or in trials currently:
https://www.endosure.com/ - a non invasive scan to look for endo
https://www.emjreviews.com/reproductive-health/news/new-blood-test-detects-missed-endometriosis-cases/ - blood test to look for endo
All of these are currently limited availability or limited in their accuracy and so it can be really hard to know if you have endo even after these investigations. It can also mean being prepared to advocate for yourself if the scans come back negative but you're symptoms suggest otherwise, as your GP may go by the tests rather than the symptoms.
Therefor the only "definitive" way to diagnose and to rule it out completely at present is to have surgery via a laparoscopy.
Laparoscopy - What it is:
A laparoscopy is a key hole surgery which allows doctors to investigate symptoms going on in the pelvic area (though laparoscopies can be done in other areas of the body too). Whilst it is key hole surgery it is still one done under general anaesthetic and needs weeks of recovery! They also use CO2 gas to inflate your pelvic area in order to be able to see, this does mean that your body will be shifting this gas after surgery and can be one of the pains you experience post surgery.
The aim of laparoscopy can be diagnostic - looking for endo to confirm it's present and get a sense of what is going on - and/or to remove the endo via ablation (burning the endo lesions away) or excision (cutting the excisions away).
It is recommended within the endo community to get a surgeon who is competent with endometriosis and who does excision rather than ablation. If you have adhesions and endo on other organs it might mean that you have a multidisciplinary team with you for the surgery.
Why excision? There isn't a massive amount of research out yet, but there is research suggesting that excision is generally better for long-term symptom relief. Ablation tends to burn the endo away on surface level which means the "roots" can remain and it can force the endo deeper under the burn. Whereas excision means that the surgeon can cut the surface lesion and the roots out, fully removing the endo.
Robotic laparoscopy? Robotic laparoscopy is where a surgeon can be a lot more precise with their exploration and surgery. The surgeon can be seated and will operate by controlling a robotic arm(s), this means they can do longer surgeries as they will be able to sit down too.
What are they looking for? I found it helpful to know that there are different types of lesions that surgeons will/should look for. It can be useful to know this so you can add it to a list of questions you might want to ask in your consultation with them as to if they look for all? why/why not?
Preparation for surgery:
Emotional prep:
You might notice you start to get nervous or anxious in the lead up to surgery. There can be a real fear that they will both find something and simultaneously not find something and it all be for "nothing".
If they find something hopefully this gives more clarity and your surgeons will be able to give you next steps on management going forward.
If they don't find something, you are not an imposter! Your experience, pain, and symptoms are still real and valid, it just means looking down other routes or getting a 2nd opinion!
Write out any questions you might have for on the day so you don't have to think about it in the moment.
Practical prep:
You might need to do bowel prep if endo is suspected to be on your bowel or if you have adhesions. Make sure you have everything ready to go
Make sure you stop eating when you need to stop.
Take some time to get your bed set up for when you return - I had to sleep downstairs as I wasn't able to manage stairs for about 1-2 weeks. So think about how you might manage this.
Get your hospital bag ready. Often you will only be in for the day (unless told otherwise) but it is still wise to take spare pair of underwear, comfy clothes, dressing robe/hoodie, slip on shoes, book/music, phone charger etc.)
Get any aids you might need in advance:
You can get seatbelt cushions or you could just take a small cushion for the car ride back to put between the belt and your stomach. You might even want one to sit on.
V/triangle pillow or wedge pillow to prop you up for sleeping on when you get back and to keep you sleeping on your back to allow your stitches to heal without pressure on them.
Normally you can shower after 24-48 hours without fully soaking the stitches but in the meantime you could use some disposable wet wipes, dry shampoo, etc. so useful to get these in, in advance
Food prep! It is worth having either prepped meals ready to go, or healthy snacks about too.
Stay hydrated the day before and morning of surgery!!
Tips for recovery
Ice packs for the inflammation pain you might have with your stomach. It is best to avoid heat directly to your stomach for a couple of weeks.
Heat packs for your back and shoulders. This can help ease the stomach pain via your lower back or ease the notorious shoulder gas pain.
Keep on track with your pain meds. If you can alternate them, e.g. codeine at 9am, paracetamol 11am, codeine 1pm, paracetamol 3pm etc. This way you're still only having 8 paracetamol and 8 codeine in 24 hours but you're getting steady coverage of pain relief. Make sure to check out what pain killers you can/can't take with your medical professional.
If you are taking strong pain killers, definitely take stool softener because constipation is a side effect that can be so uncomfortable and painful with laparoscopy recovery! It is expected to have a bowel movement within 5 days of surgery, but your gut will be quite sluggish after anaesthesia! If it's been longer than 5 days and you're feeling really uncomfortable contact your care team, GP, or 111 (in UK) if you're really struggling/out of hours to look at a gentle laxative that can help.
Ginger tea or ginger biscuits for nausea can be really good. Ginger is a great anti-inflammatory and stomach soother, just in moderation. Too much might cause some reflux!
Also for nausea and acid reflux - Pepto-Bismol or Gaviscon. Though it can be worth contacting your health care provider if you're worried about reflux flaring whilst in recovery as they may be able to give more stable long term support as all of the above are fairly gentle short term solutions (1-2 hours of relief).
Peppermint tea, peppermint capsules (low or medium strength if prone to reflux), Windease, and/or love hearts can be really helpful for the gas pain and any bloating you might have.
Gentle movement every hour or so. Shuffling about the house for 5 minutes every hour or two can help ease the gas pain and get your gut to wake up a little.
Removing dressings, do this gently. Lie down, breathe to relax, and use natural oil (e.g. coconut) to reduce the stickiness.
Getting dressed, you might need someone to help you with your lower half, but otherwise take it slowly. And wear really loose clothing. I bought a couple of items and pants in bigger sizes to ease that feeling of material on my skin.
What worked for me and my experience:
*I've left a couple of things in "normal" font like this for general info that has come from my experience.*
I have had 2 laparoscopies and my prep and recovery were fairly similar. I'll highlight what I feel are relevant useful things to know about my experience that others might also go through:
When I woke up from my first laparoscopy, I was emotional. I cried immediately! So be gentle with yourself.
My first I could have someone with me whilst waiting however for my second this wasn't allowed. So be prepared for being on your own in the wait for surgery.
Stay hydrated! This last laparoscopy I was told not to drink from 6am. I was last in and came out of surgery at 6pm (it was a 3-4 hour surgery too). I was SOOOO dehydrated which meant the anaesthesia when being injected was immensely painful (normally it tingles but this was so painful I was crying as I dropped off), but also meant that I couldn't pee when they needed me to in order to be discharged. I was nearly admitted overnight as I drank 2 litres in the 2 hours on waking up but only had 61ml of fluid in my bladder when scanned......So, speak up for yourself when waiting if it's been a few hours as having something to have little sips on before surgery is really important.
You get told a snippet of what was found when still groggy and waking up from surgery.
My nausea and gastro discomfort in the first 2 weeks were the worst for me. It meant eating really small snacks and bland food (toast, boiled eggs, biscuits/crackers, plain porridge etc.).
The pain I felt after robotic excision was so much less than what I had after my ablation.
It took me about 3 weeks to feel like a somewhat functioning human again. I am 4 weeks post-op exactly today and the tiredness/fatigue is still a challenge, my energy levels still feel limited, and I still have internal pains too even though my stitches are basically healed.
My first laparoscopy I had a mild allergic reaction, it was small red dots all over my stomach, but no known cause. I went back to my hospital and they got me on some allergy medicine with a further check in and all went well.
My biggest tip, if anything doesn't feel right, call your health provider/team/GP/or go to your walk-in centre.
A follow up from surgery will also look different for everyone. For my first I was given a follow up 3 months after, my recent I don't have a follow up but can initiate one myself within 6 months if needed. The follow up will be to check how recovery has gone, how symptoms are, look at treatment and ongoing management.
Treatment for endometriosis:
Currently there is no cure for endo and so treatment and management is the best we have.
As it stands the treatment for endo tends to be a mix of surgery, hormonal medication, and pain medication.
Hormonal medication is quite vast, it might be birth control via tablets, injection, implant, or IUS. The coil is often talked about as, especially, if you also have adenomyosis the coil is local hormonal treatment and so can manage endo and adeno symptoms more effectively. However many people also don't get on with hormonal treatment or just don't want it, and so this really limits treatment options.
Other hormonal medication might be things like Gonadotropin-Releasing Hormone (GnRH) such as Ryeqo. This induces a medical menopause, which is reversible once treatment is stopped. This is often used in cases where other treatment has been unsuccessful or for the short-term in lead up to surgery.
As with all medications, it's good to check the side effects and make sure there's no issues with any other medication you're already on or any other conditions. I was prescribed Ryeqo however when I had a look into it I realised I really shouldn't take it as I have migraines with aura!
Management:
Management can come in many forms and will look different for every person depending on what you experience, other conditions, environment, etc. so I will cover this as best that I can.
Diet - This isn't "fad" diets but diet as a full. A big part of management for lots of people with endo is looking into dietary factors. It might be that you have certain triggers that set off endo flares (sugar is a big one for me), or it might be that you want to follow an anti-inflammatory diet completely.
There is also suggestions that certain supplements can help with certain symptoms and overall wellbeing. This is a trial and error process and should be done in conjunction with health care providers if you have other conditions and are on medications too.
Movement - gentle exercising is suggested with endo. This can be difficult though as for some people exercise can actually bring on a flare up. So finding your own way of movement that works for you is important here and doing it in a paced way too.
Heat/cold -
Heat is good for soothing the pain. Some people do end up with burns from overusing heat though due to the intensity of the pain and heat being the only soother, so do be careful with this and limit direct skin contact where you can.
Cold is then good for reducing inflammation, so if you're feeling swollen or bloated a cold compress might actually help more than heat.
https://internationalendo.com/cold-plunge-sauna-endometriosis-pain-relief-benefits/
TENS (transcutaneous electrical nerve stimulation) - a TENS machine can help ease the pain by sending electrical currents through your skin via electrodes on the skin. This can ease the pain we feel in that area. Do check if this is safe to use as it may not be suitable for some people, with pacemakers, for example.
Stretches - stretching can ease pain as it helps stretch out a cramping muscle. I find child's pose particularly helpful when in bad cramps.
Pelvic Floor Therapy - If you're experiencing extreme pain, hypertonic pelvic floor, pain with sex, and/or bladder or bowel issues, pelvic floor therapy can be really helpful in helping relax your pelvic muscles, having more control over them, strengthening them where needed, and and exercises to make this an ongoing practice in management.
Alternative Therapies - some people also find that alternative therapies like massage, accupuncture, and reflexology to be helpful in pain management and also relief for other symptoms too.
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