Endometriosis/fibroids/worse?

[VivaLeBeaver]

I'm going to have to make an appt to see the GP, will ring tomorrow. I've been putting this off for ages.

About 9 years ago I had a laparoscopy to be sterilised and the consultant mentioned that I had endometriosis. At the time I had no symptoms so nothing was done.

For the last 18 months I've been having very heavy periods and they're getting worse. I pass significant sized clots, can flood through a super tampon and towel in 90mins. Period pain is bad.

My periods are quite irregular and I can sometimes only go about 16/17 days between periods.

I get awful bloated/heavy abdominal feeling that is there all month. But when I have my period it is like I have a heavy bowling ball in my stomach.

I find sex painful.

I get a random stabbing pain up my bum (not sex related thankyou!). I can just be walking along and then it feels like someone has stabbed me up the back passage with a knife, its so bad that I've screamed out loud before now in the middle of a shop and then been there doubled up unable to move with people staring.

Is it reasonable to push for a gynae referral, am worried the GP will try and fob me off with the pill or coil to sort my periods out. I really want the problem sorting rather than the symptoms and am not keen on taking hormonal contraception. I got sterilised so I didn't have to put hormones in my body.

I have no experience of endometriosis but that sounds like a really awful thing to live with! I don't think you would be unreasonable at all to push for a gynae referral. I think if you explain it exactly as you have here your gp will refer you but make sure you tell him/her exactly how bad it is, cry if necessary and don't let them fob you off! Good luck, I hope you get it sorted soon xx

I had exactly the same symptoms as you, I had endometriosis.

I had endometrial abalation by laser and it has been a huge success.

I'd go and see the doctor and push for a referral. Apparently the adhesions caused by endo can sometimes get stuck to the bowel and cause pain - and I've been told that it can be harder to treat effectively.

Thanks for your replies. I went to the GP and made it clear that I didn't want the pill or a coil. He's going to book me in for a bimanual examination and swabs. Also take bloods. Found out that I have a UTI while I was tehre today so now have a/b for that.

He says if the swabs and blood tests come back normal then he'll refer me. He did sound disappointed when I flatly refused to try the oral contraceptive.

Thanks for the update, sounds like the GP is being helpful and at least things are moving in the right direction.
Best of luck with the tests/checks.

What you write could all be related to endometrosis. Deep pain during sex is very common with regards to endo as are the other symptoms you mention. (I winced at recollection of the rectal pain as I have had this and I also have endo).

Do not be fobbed off this time around; insist on a referral to a gynae with a specialist interest in endo.

Bet you a crisp £5 note that the swab will come back as normal. Blood test may detect a hormone imbalance but that also depends on the day this is carried out. Such blood tests are usually done around day 2 and or 10.

The tests that you have been booked in for will not detect endo if it is there; it is only detected through a laparoscopy. The blood tests though will help determine a cause for the irregularity of periods. GP should be referring you now to a gynae and not sod about with tests as it will only delay things for you.

Also look at www.endo.org.uk as this can be helpful as well.

GP said he wanted to rule out Pelvic Inflammatory Disease and also any thyroid problems as he says that both of those can cause my symptoms. I'm happy to let him rule those 2 out as the tests will only take a few days to get the results of, I'm going back tomorrow to have it all done.

Then he'll refer me to Gynae. I'm also fairly sure these tests tomorrow will come back clear.

Atilla - have you had any treatment for the endo?

Hi Viva,

What did GP say about your previous endo diagnosis?. Its appalling also that nothing was done at that time due to you having no symptoms!!. That just gave the endo a chance to further cause internal havoc.

Many GPs know sod all about endo and I bet you a crisp £5 note that your result for PID comes back negative. The thyroid may or may not have some role in your irregular cycles. However, fibroids and endo can also cause heavy/irregular bleeding - these also need to be considered.

At least you will be referred to a gynae after these tests; you should be referred as a matter of course. You really need a gynae with both up to date and specialist knowledge of endo.

Yes. I have had treatment for the endo (this was in my uterine cavity). I had diathermy surgery to remove the endo. It can recur post surgery and I still get some pain now several years post op but it is not anything like as bad as before. I saw the photos during the follow up appt about a week post op, these were going to be used for training purposes. If my insides helped trainee gynaes diagnose endo properly internally then I am all for it. I have had endo since onset of menstruation at 14. Got diagnosed at 31!.

Good luck to you, keep us posted as to developments.

This GP is a different GP to the one I was with when I had the endo diagnosed all those years ago. When I told my GP about it yesterday it was the first he knew about be having it.

I don't think my last GP ever mentioned it and I never asked him about it. As the gynae consultant said it didn't need treating at the time I just believed him and never gave it another thought. The odd thing was though that I had the laparoscopy for frequent periods last time, I'd only get a 3 day break between periods and then the next one would start. I was convinced it was my coil but they only took that out during the laparoscopy, looking back it would have made sense to have taken the coil out and see if that worked before making me have an op. And it would have made sense to have treated the endo at the time. Bonkers.

I am going to ask for a different consultant this time. I work with them all now so know which one is the best so thats useful. My heart keeps telling me I'd quite like a hysterectomy just so I don't get other problems or the same problems further down the line. But my head tells me that major surgery might not be the best option.

I have endo and some of your symptoms sound familiar. Especially the rectal pain.

I had a laparoscopy as they were looking for polycystic ovaries at the time but they found endo instead. I had the laser surgery then got pregnant (I was being investigated for fertility problems). They do say pregnancy is the best 'cure' for endo but my doc thinks that mine was back. I am currently pregnant again so not really any symptoms at the moment but I'm not sure what to do after. Doctor did say they will treat with coil (not happening) or implant. I won't be able to have the laser surgery again as they only use that as a fertility treatment and as I have a child I won't be eligiable anymore. My hospital really is a shit one.

There's no way I'd be having the implant or coil. I don't want any hormonal treatment. Agghhhh, I didn't realise that the gynaes might be pushing me down that route for actual endo treatment.

Viva, have your seen the Endometriosis UK website - it'a got lots of useful information.
I'm linking to the pages on treatment, as there are some non-hormonal/non-surgical options.
There's also some ideas on handling your consultation here.

Try not to feel you are being pushed into treatments that aren't right for you.

Thanks for the links, have been having a look just now.

Had my appt this morning so swabs and bloods are taken. Apparantly I have a bulky uterus. Dr said it could be a fibroid but he couldn't feel one. But he could palpate my uterus above my pelvis which he shouldn't be able to do.

Why are the medical terms for female problems always so darn flattering - bulky uterus indeed...

Hope you don't have to wait to long for the next steps...

Well all my swab results have come back negative. My bloods show that my hormones are fine but ferritin levels are low so have started taking iron.

Back at the GPs next week to get the gynae referral and I can then find out for sure if its a fibroid.

If it is then I'm going to push for a hysterectomy.

Viva

I claim my £5:)!. Seriously however, I knew those results would come back negative. I would also say to you that endo and fibroids can both cause heavy bleeding.

You certainly need a gynae referral in view of the previous endo dx you've had as well. My "bulky uterus" was due to endo.

Be very wary if they straight away offer you a hyst; this is not always the treatment of choice these days and I would seek a second opinion. If it is a fibroid then other surgery like a myomectomy may be possible. If endo is the root cause of these problems a hyst would not necessarily be the answer as it can recur post hyst. If a hyst was performed your ovaries would have to be removed at the same time thus putting you into surgical menopause. If endo for instance is on the intestines a hyst would not address that.

A hysterectomy isn't necessarily a cure for endo as it can be in other parts of the body, like pelvis (which is where the found mine) but I also know, as I have rectal pain, that it is likely to be there too which a hysterectomy won't do anything about.

is ovary removal a cure for endo, I tried twice the hormone therapy, each time it grows back, also had an injection into it, am in agony again with it increasingly as it grows again...

I wouldn't have thought so. If they remove the whole lot for a hysterectomy, I can't imagine just removing an ovary is going to help either. Sorry.

Have you had laser surgery or there is a new one now where they 'peel' away the bits of endo. That is suppose to be better than the laser (which I had) and I found out about it on the net when someone on here linked it.

NIGHTMARE.

major empathy, i've had endo for 20 odd years and it still rears it's ugly head after laser treatment. about to have my third laparoscopy as they think it's spread to my intestiines.

i too refuse hormone treatment and just stopped taking cerazette (the pill) as within a couple of days felt kerrazy.

also think i have adhesions/blockages around bladder area as get recurring uti symptoms.

if i were you i'd insist on a laparoscopy to gauge how bad it really is, check for cysts/fibroids etc.

I get recurrent UTIs as well, had one a few weeks ago and it started again last night. Peeed on a anaylsis stick and loads of leucocytes, nitrites, blood and protein in my wee. Luckily I have access to plenty of antibiotics.

Well had a scan and no fibroid to be seen. Off to GP next week to push for a referral and ask for a laparoscopy. Am gutted actually its niot a fibroid as this means its more likely to be endo and I know thats harder to treat.

Plus I have another UTI and feel like shit. Am on my 3rd course of antibiotics in a month.