Advice please on which route to take - Endometriosis UK

Endometriosis UK

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Advice please on which route to take

Muddy1980
Muddy1980

Hi everyone,

I am looking for some advice. I've had pain in my lower left stomach for over 1.5 years and I noticed that some months its worse 2 weeks before my period, then fine during my period and then the week after it slowly builds back up again. I get aches and pains over my left hip and down my left leg.

This last month I have hardly felt it at all but the month previous to this was the worst I have ever felt.

I had a gyne referral and discussed options with the Dr yesterday. Basically he said that I don't have 'A Typical' symptoms of endo (which is fine by me, but it would be nice to know what is causing the pain, I have had ultrasound scans and colonoscopy all clear).

He gave me 3 options.

Either take the medication and see what happens

Have a laparoscopy so that he can search for any endo

Look at pain management

Off the back of this he said if we went down the surgical route there is a chance of causing me bowel and bladder problems and there is a risk of death.....this has scared the hell out of me.

He has now given me 3 weeks to decide what I want to do. Basically I don't know what to do. If its not endo why would he bother looking and putting my life at risk. Do I just take the medication and see which will throw off my levothyroxine and make me ill anyway or do I just put up with the pain and never know what is going on.

Why have the laparoscopy if he is just going to treat me with the meds anyway?

18 Replies
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I have same Symptoms as u but mines on the right side all scans clear and even colonoscopy clear I don’t want a laparoscopy either cause people that have had it said at more problems and had no endo and people that had endo said good chance it come back anyway does your pain go when u come on a period and what does your pain feel like I used to think I had a urine infection every month what medcine have they suggested u try I’m gonna try the mini pill they suggest the coil but don’t fancy that one

Muddy1980
Muddy1980 in reply to LISaprag

Hi, Yeah it normally goes away about 2 days into my period and the Dr said that it should get worse it anything, but my symptoms are not typical. I've been tested for just about everything, sometimes I think it plays up my thyroid and could be hormonal. My pain can be really sharp and constant like someone has put a knife in my side and its still there. Other times is can just be a dull ache. If I stretch over and stand back up it can shoot across my side and then disappear altogether. Some days I can be in agony and then the next day its as if there's nothing wrong, there does seem to be consistency.

I don't need to be on any contraception and all this started as soon as I came off the pill, so to go back on seems crazy to me but if it 'fixes' it then fine. He suggested the pill to me, but I hate being on something that controls my hormones.

LISaprag
LISaprag in reply to Muddy1980

I have the all the same symptoms u have but I’ve never been on the pill I hate pills but I’m thinking of trying it just to take the pain away I’ve got it now started 5 days ago I’m due on Friday today seems not too bad but I feel so not myself and I noted this down last month and was the same few days into my period it goes then I got a week and half of good days then it comes back agin sometimes it feels like I have a urine infection with the burning keeps up I can’t sleep I feel sick I think i used to think it’s pms which I hope more then endo but like u I don’t want a operation cause it can’t be cured anyway just managed the pill stops u ouvalating and I get them pains too where my ovuy is and where my urtues is too and terrible back pains that’s anew symptom

LISaprag
LISaprag in reply to LISaprag

I would try medication if that don’t work a laparoscopy is the only way to find out I’m 43 so hoping to go into menopause early cause doc says once u hit menopause it goes away

Muddy1980
Muddy1980 in reply to LISaprag

It's nice to know in a way I'm not on my own, not that I want anyone else to be suffering ha ha. I don't get any pain when urinating but I've had a lot of constipation issues with blood appearing which is why I had a colonoscopy, but there was nothing at all there. I do get ovulation pain though. I also get the week and half of good days, everyone at works thinks I'm nuts because I love being on my period as its a break from it all, and I can deal with normal cramps, they are nothing in comparison to this pain.

I'm 38 and everyone in my family has gone through the menopause at 42 - 47. I don't plan on anymore kids and my husband has had the snip which is why I came off the pill.

LISaprag
LISaprag in reply to Muddy1980

Did u have biopsy taken when u had colonoscopy

Muddy1980
Muddy1980 in reply to LISaprag

No i didn't as there was nothing to grab at, it was crystal clear and healthy

LISaprag
LISaprag in reply to Muddy1980

Same as mine but docs done a calprotection test (poo test for inflammation) and came back postive which means my pains could be chrons but I don’t have all the symptoms just pajn and consirpation and had colonoscopy and would of picked it up surely that’s what me think it’s endo

Muddy1980
Muddy1980 in reply to LISaprag

I had the poo test done too ha ha and mine came back with inflammation which is why they then sent me for the colonoscopy. How are you doing on the tablets...I think I'm going to try the meds before they investigate further

LISaprag
LISaprag in reply to Muddy1980

Do u know what your reading was for the calprotection test and what test they want u to have what they saying u have

LISaprag
LISaprag in reply to Muddy1980

I’m not on any tablets yet

Muddy1980
Muddy1980 in reply to LISaprag

That was my last test and I didn't get the results just that it was inflamed. They just referred me to the specialist after that who has said you can try medication or have a lap

LISaprag
LISaprag in reply to Muddy1980

Ok I was lostvfor a moment u had a colonoscopy came back clear so they sending to a gynaecologist and they said u can try medication or have a laparoscopy did doc not say why your inflammation test was high and u know what u gonna do I’ve booked to see doc on Wednesday probley try the mini pill

Muddy1980
Muddy1980 in reply to LISaprag

Hi yeah, the specialist said endometriosis can make it inflamed but so can diverticulitis which can form on the outside of the bowl and not be picked up in the colon scan as that only looks inside. I've been reading up on anesthetic and hypothyroid and it looks like Im at quite a high risk of problems, so for now I think I'll look at taking the progesterone only pill if that is what he recommends just to see if there is a difference. If not I'll have to go down the lapa route :(

Hi muddy

I'm sorry you are facing a difficult decision.

If it's any reassurance I've had two laparoscopys with no problems. If it is for diagnostic purposes the risks would be less, obviously greater if they are aiming to treat any endo.

Endometriosis UK website has a useful downloadable leaflet about surgery with info on the risks eg death is 1 in 12,000 women.

A laparoscopy is said to be the best way of diagnosing endometriosis however if you are unhappy about the prospect of surgery and don't know how much it would help your situation presumably this could still be a last resort if medication doesn't help?

I'm awaiting another laparoscopy in. March to remove a cyst and endometriosis having been in a lot of pain for months so understand your worries as this will be more invasive than my past ops which were investigative only.

Good luck whatever you decide

Muddy1980
Muddy1980 in reply to Jojams

Thanks you for your support. I have had a laparoscopy before and had my appendix removed, but I have more health problems now than when I did then, which is what is making me anxious. If it was a case of needing an operation to remove something then I wouldn't mind so much as it has a purpose. I'm just nervous about putting myself in a situation and making things worse if its not necessary. I'll check out the website, thank you

Get a second opinion if you can, at least you will know 100pc

I sympathise with your predicament. It's hard to know how, to proceed and very frustating and inconclusive, also like most conditions, there is a lot of misinformation out there. That is why I am spending a considerable amount of time on this forum, in the hope that it might help someone else make a correct diagnose. I have'nt had a 100pc confirmation of the condition as yet.

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