Has my Endo returned..?: Hi everyone. I’m... - Endometriosis UK

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Has my Endo returned..?

jxedc profile image
5 Replies

Hi everyone.

I’m new here, but looking for advice before I go and see my GP; I don’t want to be fobbed off again and made to feel like my pain and symptoms aren’t anything concerning...

I have been struggling with pelvic pain for a few years, I’d say at 3.5 years at the very least. I got taken seriously after dozens of trips to see my GP, and in November 2016 I got referred to a gynaecologist. He suggested endometriosis and a laparoscopy, because that’s the only way to accurately diagnose it, and on March 22nd 2017 I had it done. They found Endo, said it weren’t severe or bad but it wasn’t mild either, and they took away a cyst that was on my left Fallopian tube... From the beginning of April until August, everything seemed ok. Not really much pain, periods seemed to be settling down and becoming regular again, so I was happy.

But then from the end of August, the pain has slowly been creeping back up in intensity. My periods are so irregular again, going from 8 weeks of periods every 10 days (that we’re long and heavy), to my last two periods being very nearly 40 days apart. The constant pain is back, but within the last week it’s gotten difficult to cope with again. Walking hurts, my lower back constantly aches and the only thing that helps a little is a hot water bottle, I’m constantly tired and I’m sick of my periods messing me about.

I have really bad pains in my lower right hand side, and most of the time if I even move my right leg I get an intense burning ache (the only way I can describe it!) in the lower right side...

Is it possible the endometriosis could be back? Even though it’s only been 10 months since the lap? It feels like it’s worse than before, too; can it come back with a vengeance?

Thank you for taking the time to read this (I know it’s long!) and I appreciate any replies :)

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5 Replies
sanchia46 profile image
sanchia46

Yes unfortunately it can come back that quickly. Go back to your doc. All the best

PaiAngelica profile image
PaiAngelica

Yes it can. I’ve found diet is literally the only thing to remedy it for me and completely rid me of all of the pains and other symptoms that come with endo. I’ve stuck to a paleo/anti-inflammatory diet for a few months since my surgery to diagnose it and it has changed my life! No more pains in or around my uterus or stomach areas and no more harsh pains in my colon. Periods are now under control and on time every month (which is miracle). Doctors refused to help me so I helped myself. Best thing I’ve ever done. Also, I take a vitex supplement daily along with a probiotic and want to start taking fish oil to help with inflammation I may still have. Any time I go off the diet, my symptoms come back with a vengeance. Hope this helps, good luck!!

Rdraper profile image
Rdraper

Hi there, yes unfortunately endo can come back. Especially after surgery as adhesions can formed after. Sorry to hear that you are still in pain. I had the pain as you described mostly everyday before. I had only been diagnosed 10 years after I suffer from period pain prior. Had a few surgeries and fed up with it as was still in pain. Last laparoscopy 3 months ago I had it done privately as couldn’t cope waiting for NHS!! Gynae took some of adhesions, endo too but also I had mirena coil fitted. To be honest, so far since then I’m pain free!! But unfortunately still bleeding but I don’t mind as I prefer it than pains!!! Hopefully, the bleeding does settle and it lasts with no pain.

I know everyone different but don’t give up finding the best solution that works for you. Don’t suffer.

Really hope it get sorted soon for you. All the best🤞🏼

Screechowl profile image
Screechowl

Yes, it can and does return ask GP for ref to endo specialist.Good Luck!

Kcresswell profile image
Kcresswell

I had a laparoscopy in October 2016, gyne removed Endo from my utrosacural ligament. My pain didn’t change at all, when I saw her for follow up she suggested that it must be nerve pain. I wasn’t convinced and to cut a long story short I sought a second opinion from a endometriosis specialist. Had my second lap with him in October 2017. He removed two nodules that were located in between rectum and uterus, known as rectovaginal endometriosis.

My pain was on my right side and I was in agony about three times a month with moderate to intense pain in between.

After my second surgery, my pain has decreased but not totally gone away. I am seeing the specialist next week for follow up.

With endometriosis it is always better to have a Endo specialist as sometimes general gyne just doesn’t have experience to locate all nodules and adhesions.

Don’t be afraid to ask for a second opinion! Research endometriosis specialists in your area. I was very lucky as the person I saw is one of the best in the country and luckily does NHS and private appointments at my local hospital. I cannot post his name, but if you google endometriosis specislist surgeons, lots of options come up.

Good luck, hope you’re pain free soon!

P.s have found that high strength fish oil and magnesium oil spray have helped with pain X

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