endo ablation & labia cyst removal

[JH21]

Hi everyone,

Bit of background. Endo sufferer, 32, 2 kids. Had laparoscopy in 2021, ovaries & tubes removed 2022.

had the best 2 years, then boom 2024 started bleeding heavy again!

July had hysteroscopy and removed fibroids. August just had more surgery an endo ablation and labia cyst removed.

might I add I’ve already had this bloody cyst removed once in 2022.

Had surgery on Tuesday, and I feel like absolute death! I’m not even sure what hurts most anymore!

Having the ablation of my womb has also just caused the biggest endo flare up.

has anyone ever experienced that?

Where ive had the cyst removed for the second time is excruciating, need to call the doc as unsure if this is normal.

like …. What next 😫

Recently just discovered that my mystery knee pain which docs couldn’t figure out could be due to my endo also!!

Just really looking for any words of wisdom, comfort, support…. A gun 😂

I’m totally over this endo life!!

[Purpleindigo]

Hey,

I completely get it, sometimes it's so soul destroying just having one thing after another !

Physiologically it would make sense that ablation of the uterus could cause an endo flare up. Hopefully, you can ride it out and then things will begin to improve as there then won't be any endo present.

Is this definitely an endometriotic cyst on the labia or is it a bartholin cyst? These are far more common following pregnancy/birth and can reoccur, as they form from the bartholin glands on either side of the labia. Unfortunately, these cannot be permentantly removed, just drained on re occurance.

If it doesn't feel right definitely give 111 a call, especially if there's any abnormal discharge from the cyst area.

[JH21 in reply to Purpleindigo]

So it’s never been called a bartholin cyst.

TMI but it was at the top of my labia. Once removed, literally like a marble!

Just had it removed again.

I had inside my womb cleared to try and stop bleed.

But my womb cervix bladder and bowel and currently fused together.

So now I feel like because he’s wiggles my womb around it’s just created a flare !!!

Honestly I just want to cry !

I had post op insomnia too! Last two surgeries I’ve had ! I’m still not sleeping properly now!

[Purpleindigo in reply to JH21]

Bartholins do tend to be lower on the labia and off to the side of the vaginal opening.

Possible that it was a vulval milia cyst if it was firm and white in colour. Unfortunately, these often re-occur.

I have to say I've never heard of an external endometrioma.

Cervix, uterus, bladder and bowel adhesions.....oh babe....No wonder your in serious pain!! It's like an endo period on steroids. Have they got a plan to sort that?

I found before I had my adhesions removed any aggravation to the uterus or bowels (period/constipation) sent me into a horrendous flare up.

It's so so hard to stay positive when you can't see an end in sight. Especially when you're not sleeping well, everything you feel is completely justified.

Things that i find help when experiencing similar:

- Eat a low FODMAP diet whilst bowels are sore

- regular paracetamol and ibuprofen (stagger them so you're always covered)

- Try using buscopan - antispasmodic good for cramping and bowel discomfort

- I use a livia (tens machine)

- you could request mefenamic acid from your GP (strong form of ibuprofen)

- hot or cold compresses may make a difference on the affected area, as this can interfer with pain signals to the brain

- rest and relax as much as possible

- you could try magnesium supplements to try and improve sleep. I know someone with endo who uses a magnesium foot butter before bed and swear by it for sleep

[JH21 in reply to Purpleindigo]

I’m only 5 days post op. Was actually discharged with morphine codeine ibuprofen and paracetamol . I swear nothing touches the sides.

I end up falling asleep for an hour after I’ve been awake so long I just crash.

I honestly do not know what to do anymore x

[Hidden]

hey. I’m so sorry you’re going through this nightmare.

Have they excised any of the disease? Also were you put on HRT? As it could be the estrogen element of HRT that’s causing the disease to progress.

I was left in constant pain after my second excision surgery where they removed tubes and ovaries. The disease also returns very quickly after every surgery, it’s annoying to say the least.

I’m just thinking if it was ablated they’d have removed the surface but the rest of the disease will still be there.

Also with regards the cyst I also get one there which goes and comes back. It seemed to get significantly worse when I was having chemical menopause and then when my natural hormones declined too. Someone mentioned the words ‘mini endometrioma’ which is what made the most sense to me.

Interesting about the knee pain too as I too get that and a numb leg. I’ve been told the numb leg is due to Endo growing on and damaging nerves. So likely the knee could be the same.

Sorry I don’t have many tips for you but if possible I’d request photos of surgery from hospital legal team and request a second opinion with a BSGE registered specialist.

In the meantime I truly hope you start to improve from your surgery soon and get some relief. Best wishes ❤️

[JOSANDY40]

Hi there,

I feel for everyone with this terrible disease which many of us are getting in some advance way in different parts of the body like your knee.

All I can say by my fight with this disease is to find ways to cut the inflammation. Mine is body weight lose, foods without Histamines or Estrogens, yeast. Taking Antihaistmes, anti inflammatories and non anti inflammatory painkillers, probotics tablets, Belladonna, Gluten/ Lactose free foods. Walking, short speed walks on level ground, floor excerises, plenty of rest/sleep . . . no gym! Probably for you ice on knee, elevation over a armrest everyday for at least 1hr and at night and morning a contact painkiller cream.

The body can find ways of making Estrogen with other glands. There's always the foods you eat that contain Estrogens, perhaps your on a add back? Endometriosis with me has setup in different parts of my body, does flare-up for a few months then another area will flare-up. My lungs were in my 30's the worst with fluid in lungs, bleeding with periods. Endo damages and distorting organs. My Pancreas doesn't work fully after the longterm use of Steriods for Endo, then I had Pancreatitis, after that my heart and food enzymes reduced. My bowel is ridged due to adhesions and operations. A few yrs ago I was diagnosed with Diverticulitis and last yr Ulcerative Colitis.

Autoimmune disease causes inflammation, often if you have one autoimmune disease you may develop others. The Thalamus in the head plays a part in balancing the body with hormones it has been documented that it can create Estrogen, there is still much to be learnt about this gland. It was noted during me taking Zoladex which shuts down Estrogen production that Estrogen was still present and when I tried IVF that higher levels of Estrogen were noted in me.

It's a struggle I know but hopefully you can find a way of reducing your knee symptoms.

My best.

[JH21]

so I had endo removed in 2021,

Ovaries and tubes in 2022,

Hysteroscopy to remove fibroids in 2024, and now a Novosure ablation inside the womb.

No endo has been touched outside the womb since 2021 so anything that has grown back since then is there.

I’m on HRT, tried many over the two years.

Now I’m on the gel and pessary.

My knee seems to be settled at the minute but think that’s because I’m literally not doing anything recovery from latest surgery.

The cyst what ever that is/was having multiple surgeries on it has now damaged my labia so I can feel a further op coming for that.

I just don’t feel any signs of improvement 6 days post op.

I’m in so much pain, and feel like I’m also having a huge endo flare up on top of everything else !

I feel like I should have learned how to manage this by now.

But each time it just gets worse !