What were your symptoms of endometriosis? - Endometriosis UK

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What were your symptoms of endometriosis?

dogdaft
dogdaft

Hi ladies,

With my operation date looming I am growing ever more nervous. I am starting to feel like it all may be in my head, that they may find nothing, nor will they have a good dig around. I feel that I have been made to believe by the health professionals that it's all in my head.

A lot of questions:

What were the symptoms that you ladies experienced? What were the bowel symptoms? what kind of pain/where? how was the laparoscopy for you? how long did you require off from work?

Will update you all with my experience.

Thanks girlies,

C x

4 Replies
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Hey, I had my first lap yesterday and it’s honestly nothing to be nervous of. I have a massive fear of hospitals but the nurses and surgeon were so nice. Going to sleep was actually nice and think it took about 5 seconds. I woke up in recovery and asked “has my surgery happened” as time goes all weird haha

I have heavy painful periods with clots, painful sex, pain after sex, pain in hips and back, constant dull ache (turns out that was an large chocolate cyst on my ovary). I have other symptoms but can’t remember. I have a post with my symptoms that I posted yesterday or the day before.

They drained my cyst and my dull ache has gone immediately. And removed all the patches of endometriosis. I’m just in pain now with my bellybutton stitch and sore throat plus the anaesthetic is wearing off so I’m getting tired now.

I don’t work as I play golf but need 1-2 months off that.

I was starting to think it’s all in my head but we know our bodies and when things aren’t normal. The surgeon will check everywhere including bowel and bladder etc. Just ask them before the surgery start to double check.

Good luck xx

hey,

I think it's normal to feel that way. I certainly remember feeling like that.

My main symptom has always been really debilitating fatigue and I've that now for 4 years fairly consistently. When it all started, I also had abdominal issues- I would have episodes of intense pain and insane swelling where I honestly went from a size 4 to looking 7 months pregnant. It was unbelievable. At that time I don't remember having many other gastro symptoms. I also had lots of odd symptoms like rashes on my neck, chest and arms, little painful blisters around my mouth and nose, an eye twitch (for 3 years!), hot flushes and awful mouth ulcers. I'm sure I had more things that I can't remember. I was initially referred to gastro- checked for all sorts including coeliacs, crohns, IBD etc but was diagnosed with IBS and sent on my way.

The issues continued but I started getting hip and back pain and a GP sent me for an ultrasound which showed fibroids and bluky, tilted uterus, I also had elevated CA125 levels so they referred me to gynae. Gynae were VERY adamant that my issues were not gynae related but that they'd do a lap to 'ease my mind'. My GP thought I had endo so suggested I try a pill (I can't remember which) while I waited for the lap. I took it non stop for 9 weeks and had a huge improvement in my symptoms. My lap found no endo and so I was discharged, again with IBS and I stopped taking the pill.

My hip and back pain became gradually worse. It feels like my hips are grinding against bone and the only way to describe my lower back pain is like toothache- it's not the worst pain I've had but oh my god do I find it difficult to tolerate. I hate taking any medication and have a high pain threshold but need to take codiene when this is bad. I think it's nerve pain- like something pushing against a nerve. I see a chiropractor which has helped me so much with this.

I was eventually referred to orthopaedics for the back pain (my fatigue was still awful during all this) and saw the dr in march this year- he thought I had arthritis and sent me for an MRI and that's where all the endo was found. I have severe endo throughout my pelvis. They've not told me exactly what's going on yet but from the immediate referral to the endo specialist centre (I thought I'd need to fight to be referred) and talk of surgery and needing a bowel specialist- I'm guessing it's deep infiltrating and my bowel is in a bad state. The team met yesterday to discuss my case and I should find out in the next couple of weeks what the treatment plan is. I've told this will definitely include surgery.

My symptoms have changed over the years but now I have chronic fatigue, lower back pain on my right side at all times, hip pain and for my gastro symptoms, I have a lot of pain when I need a BM and it's urgent- it's just intense pain and I HAVE to go. This may be way TMI but... I don't think my food is being digested properly, my stools don't look very 'digested' (god- sorry! ha ha!). I still get abdominal swelling but it's not as bad as it used to be, it's still very sore though. I think I bleed rectally when I have my period but I've found this difficult to know for sure- I think I do though.

My lap was absolutely fine. I was VERY scared about it- I thought I would die from the anaesthetic or they'd open me up and I'd be riddled with cancer or something awful. But, as far as these things go, it was a fairly pleasant experience. I was treated really well and felt safe. I did panic when I was going under the anaesthetic but they just got it in me quick and the next thing I knew, I was in the recovery telling the nurse how beautiful she was!!!

I think I went back to work about 4 weeks after my lap. I had been off for a long time before it though due to the fatigue. When they told me there was nothing there with the lap, it basically confirmed that feeling that I was making it all up and made myself go back. It's 2 years on now though and I've just had had my contract terminated due to grounds of ill health after being off sick since last Oct- I really shouldn't have gone back to work back after my lap but it just shows the importance of having a diagnosis and feeling validated.

I want to mention too- I'm a huge believer of alternative treatments and the benefits of non medical approaches. I've had loads of benefit from chiropractor, acupuncture, physio, reiki, yoga, meditation etc. It obviously hassn't cured me but it's helped me cope with a really bad situation. I also do all the endo diet stuff- I'm vegan and avoid soya, sugar, alcohol and gluten. I believe in this all being anti-inflamatory and good for illnesses like endo but it has not made any difference to me at all.

Sorry for the life story here. I hope it helps. I know how scary it is and how much you will want a diagnosis so you have a reason for the way you're feeling. But even if it's clear- it's not the end of the road. Feel free to message me. This forum is a life saver. xx

Difficulties with passing gas , passing stools , peeing

Constant pain on my left ovary even there is no cyst and what concerns me more that i suffered from very large ( huge) cyst on my right ovary 4 years ago even it was very big my issues because of it were pressure on my bladder and bowel I never had pain on that overy

Now i have pain on the left ovary without cyst

It is not associated with period time or ovulation i have it 24/7

I have severe nausea which makes even drinking water is difficult

I had always bowel issues I had constant constipation but after last period I developed Diarrhea

Last two period i had heavy bleeding and unbelievable clots i mean the amount

I’ve been diagnosed with endo since this post Hun.

I have had a lot of the difficulties that you’ve mentioned, including the difficulty passing bowel movements, sharp stabbing pain up my bottom and in my ovary area. During my operation, it was noted that I do not have any cysts, although I have a constant full ache around my left ovary.

I do have days where I tend to have nausea. When I get a bad flare up, I seem to have acid reflux all of the time, it doesn’t matter why I eat.

My periods are extremely agonising for the first 2 days, and recently my periods have been scarily clotty.

This condition really is the devil!! Unless you have it you don’t understand. Many people that I have told just seem to associate it with heavy and sore periods, uhh no!!! It affects my life every single day.

C x

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