Help!

[Maria1024]

Hello.I'm new here and I have a question. In your opinion and if u had a Endo surgery u think is better to take the surgery or not? I mean u had any improvements after the surgery? I saw 2 doctors and one said I should take the lap and one said no. I have stage 2 but with really severe pain. Thank you!

[MichelleOlivia]

My gynaecologist explained that usually if endo is left untreated it gets worse over time and can effect other organs such as bladder, bowel and kidney. I'm 3 weeks post lap, I had excision of endo that had progressed from me having no adhesions in my diagnostic lap in the summer, to my ovary been adhered to my pelvic wall I think it was when they went in to remove the endo. I am not feeling any benefit of the removal of the endo yet, but they explained it can take a while for your insides to heal after excision and whilst it is healing can be very sore. I am hopeful I will see some benefits in my next cycle. X

[Maria1024 in reply to MichelleOlivia]

Hopefully you will be better soon! x

For the moment I am using VIsanne (Dienogest) as treatment for about a month but to be honest there is no improvement with my pain. Day by day is getting worse.

[becky1985]

i agree with Michelle below, i had my second lap on Monday evening. My first gave me about 10 months of pain free. Yes unfortunately it does return as i have had more removed now (dont know how much yet will find out next week). on my first one my ovary was attached to me due to scaring and adhesions which caused a lot of my pain. It is entirely up to you but i dont regret having it. a couple of weeks of being uncomfortable after the op but it does have its benefits. I would speak to them both again and ask exactly why they think you should/shouldnt have it. then make a decision on which is best for you. good luck x

[Starry]

All surgery carries some risk , for example things like complications, adhesions and nerve pain. So it's a calculated balanced judgement based on individuals age, symptom severity, Endo type and severity, whether any organs are at risk and the individuals preference.

On the standard treatment pathway you would normally explore stronger medical treatment first, potentially a mirena which is more effective than the pill as it's locally applied and then possibly a GnRh like zoladex.

A overview of treatments I found useful is here endometriosis.org/treatments/

Because of the risk of adhesions worsening pain, if you are young and can find something that enables you defer surgery for a while it may be an idea to. About surgical adhesions

healthywomen.org/content/ar...

That said some endo types are more hormone resistant than others, particularly rectovaginal Endo. Unfortunately mine was such a type well advanced and threatening to infiltrate the bowel so I ended up with not much choice, though I chose to try the medical options first.

After my diagnostic lap I developed a bladder infection, which cleared quickly and chronic fatigue, which did not.

Since my main surgery I developed nerve pain and gastric issues/reflux esophagitis from the CO2 pressure on the abdoment plus antibiotics and NSAIDs I was given for post op pain. It has taken me nearly 4 months and I am still not right or feeling well in myself. On the plus side, I have no more brain fog, reduced back pain and I avoided a bowel resection becoming inevitable.

If you do decide to have surgery and feel it's best for your situation it's worth investigating the technique proposed to be used. In particular be cautious of superficial ablation as if done inappropriately can leave Endo behind and be painful / ineffective.

endometriosis.org/treatment...

Surgical technique and skill is a big factor in how well it goes. Your surgeon at a minimum should have a "special interest" in Endo registered per the new NICE guidance. Ideally being treated in a BSGE Endo centre is the best option if you can be, where the Surgeons have been trained in advanced laparoscopic excision so are more skilled in Endo excision and are accredited every year to a good standard. After being seen by both general and BSGE I personally would not allow a general gynae to operate on me for Endo.

Good luck in your decision. This is the sort of info I'd have liked to know before I started hope it is useful.

[Maria1024 in reply to Starry]

Thank you so much for all your answers! This is really helpful for me.

Next Friday I have another appointment with my gynaecologist and from all u said I can ask him some questions.

Take care! x

[Rachfrm123]

Hi there. My first lap ended up being an emergency at which point I was ready to cut it out myself due to the pain. I was admitted 4 x through ED in 10 days and put on morphine for pain. With the lap they found that the endo had twisted a Fallopian tube so badly it had cut of blood supply and was now a very bad Infection, so I lost the tube. Also lots of endo in pouch of Douglas etc. Recovery was reasonably quick and OMG no daily pain!! Then Visane for a year. Then a diff doc who followed my pain with a chart (mild - moderate pain around my period only, totally manageable) . She recommended a 2nd lap. It was 5 hours, plus a Mirena, 2 surgeons as lots on the bowel. But - absolutely life changing. No pain for 18 months. Slight periods. I've never been so good.

Caveat - I'm 47, had my babies so no risk there.

Good luck to you!

[Maria1024 in reply to Rachfrm123]

Thank you! x

[PJ11]

I've had the surgery twice and each time once I'd healed I felt 100% better. I had hurrendous fatigue and pain before the surgery so I felt it was worth it, the first time they found I had a prolapsed womb, a twisted Fallopian tube and severe adhesions of endometriosis. The second surgery about 10 years later showed I had severe endometriosis and it had spread to my bowel so surgery helped a lot. I always find running up to surgery I feel very fatigued, pains, And get ill a lot like several chest infections and pick up everything going. I hope you get sorted and don't have pain for much longer good luck xx

[Maria1024 in reply to PJ11]

thank u x