Advice, please!!!

[Simo123]

Hi everyone!

I'm just looking for some advice if at all possible and would really appreciate any replies as I feel like I'm at my wits end.

In 2014 I had some symptoms of endometriosis - severe pain during intercourse, stomach pains and back pains. I was on the mini pill at the time, so I didn't have periods. I had a laparoscopy and was told they found a small amount of endometriosis, 'about the size of a two pound coin'.

I wasn't given any other information and due to being young and naive I didn't ask any more questions. The symptoms instantly improved!

In 2015, I fell pregnant with my son and felt amazing during this time! Shortly after he was born some of my symptoms resumed, stomach pain, spotting in between periods, brown blood/discharge. I saw a gynaecologist who recommended going on the coil to reduce symptoms, but at the time we were TTC and not long after the appointment we fell pregnant with my second son.

I felt absolutely awful during my pregnancy with him and to be honest this has continued since he was born in 2019. My periods are so irregular (they've never been like this before), they start then stop, I pass brown blood, clots, get such terrible period pains/lower back pain and suffer with bloatedness prior and during my period. I have lots of bowel issues at the moment and often have a reoccurring pain in the right of my stomach. I don't however experience painful sex.

Does this sound like endometriosis? I've had clear ultrasound scans, normal smear etc. When I've mentioned endometriosis to doctors it's always been dismissed and I really don't know where to go from here.

Any help would be so appreciated x

[079me]

Hi simo123, sorry to hear ur not well still!! The symptoms are sounding like they could be endo.. i had smears and ultra sounds that showed nothing and they only found my endometriosis with the laparoscopy. Keep pushing for tests!! If you had that tiny amount before, it could have grown and worsened. I really hope you can get some help xx

[Simo123 in reply to 079me]

Thank you for your quick reply, it's so appreciated. Is it likely that endo can return/grow back? When I had the small amount removed before the surgeon appeared to dismiss it, saying it was a tiny amount and shouldn't have been a contributing factor to the symptoms I was experiencing. About two months after my laparoscopy I needed my appendix out and she blamed my symptoms on that rather than endometriosis xx

[079me in reply to Simo123]

I believe it can continue to grow yes. Did the removal of your appendix make the pain stop?

[Lewisisgreen in reply to Simo123]

I believe that the amount of endometriosis that you have does not always correlate to the amount of pain you can suffer. Eg: a small spot can cause huge amounts of pain. A surgeon should know this🤦‍♀️

[BetterFlyAway]

Hi there, I'm sorry to hear about your experience with this problem. I would suggest making appointment with various GPs as one will always (in my experience keeping turning you away.) Keep chasing them up about the pain and symptoms that you have been having.

Have you changed your diet at all? As this really helped me with my endometriosis. Pilates and yoga are good ways to help cope with the pain. Meditation for pain is great too! Drink lots of herbal teas for e.g. camomile, pepper mint and ginger and lemon.

I really hope you get everything sorted out very soon as I can understand your worries and concerns with this horrible disease.

[Whoisthis in reply to BetterFlyAway]

What diet to you explore? Did you find you had food triggers?

[Simo123 in reply to BetterFlyAway]

Thank you so much for your reply. If I'm being totally honest, my knowledge of endometriosis is really limited but I will definitely give your suggestions a try. What kind of diet helps with endometriosis? xx

[BetterFlyAway in reply to Simo123]

You're welcome! I'm happy to help!

It is recommended to cut out red meat, chicken, pork and ham. These contain a lot of hormones which is not good for endometriosis or in general to be honest. Eat lots of vegetables especially green leafy ones! Plenty of fruit! Cut out wheat and gluten as these cause a lot of bloating hence the reason for stomach cramps. Drink lactose free milk as normal cows milk again causes bloating and wind. Drink water as this will clear out any toxins in the body. Fish is good as it contain omega 3 oils.

I really hope this helps you out!

[Whoisthis in reply to BetterFlyAway]

Did you also cut out eggs? And are you super strict with the above?

[BetterFlyAway in reply to Whoisthis]

For me personally I don't cut out eggs and yes I am very super strict with the above because I now understand what my body can not tolerate and the reasons for my pain in the past. I am very sensitive to the ingredients i now avoid and it has made A LOT of difference in my diet.

[Whoisthis]

Hi,

sounds hard with two small children as well, I would Get yourself to the GP the discharge and periods could be all kind of things so go and rule out any infections, or cervical issues. the fact you’ve had endo before does point to this also as it’s hormone linked the current hormone levels will be all over the place, so while your being investigated you could maybe ask the GP about the pill or go to a hormone specialist. That would regulate one part of your body and settle down while you get referred to an endo specialist.

Don’t let a normal gynaecologist fob you off, look for your local endo specialist unit, and make sure your GP refers you there.

Let us know how you get on

[Simo123 in reply to Whoisthis]

It definitely is as it's really affecting my mental health too, I can't stop worrying! I called the doctors yesterday and he said with everything going on apart from a blood test for POCS (which I'm pretty sure I don't have) there's not much they can do at the moment. But hopefully when everything is back to normal I'll be able to pursue it a little more!

Thank you so much for your reply x

[Whoisthis in reply to Simo123]

So today or over the next few days they are launching a campaign about the fact the NHS is open referrals are happening and GPS need to be dealing with worry’s and issues.

I’d really suggest you find your local endo clinic, what are you based? And go back to the GP and ask them to put in a referral and get you one step ahead to being seen.

I’m afraid you are being fobbed off, and you need support right now, your mental health is crucial while raising the babies and juggling everything you have on right now.

If you can find the strength keep going back, make a pest of yourself and you can achieve a GP the clinic you want referring to and they are obliged to do that. It has a name? But I can’t recall what that is..

[Whoisthis in reply to Simo123]

bsge.org.uk/endometriosis-c...

Here you go! Don’t let them book you for any old place, get yourself seen day one by a specialist 👍

Big hugs x

[45Bumbleb]

Hi. I was a bit like you with my symptoms. Over the past few years my periods got tougher, more painful and clotting. I didn’t have pain during sex . I had clear ultrasounds on two previous occasions.

However within 18 months of the last ultrasound, and only a year after a last blood test I had bleeding between periods , so I went back again! The latter is an alarm bell for most doctors ! Still no pain during sex, bowel issues were unpleasant during my period

On this final occasion, I was resubmitted for an ultrasound and blood tests .

Blood test and a high ca125 marker, ultrasound now showed multiple fibroids, two cysts 7cm and 4cm, and a polyp

The short story is that I had a total abdominal hysterectomy due to the lumps and bumps but it did show in surgery that I had Endo Level 4 - all over my Fallopian tubes,,bowel, bladder, appendix . My point is that my body changes a lot between appointments over time , my belief is that endo was always there but being persistent meant that another year flagged further issues and growth - as 079me said, keep pushing ! I’m so pleased that I went back again, I nearly didn’t as it sounded like a broken record but my gut instinct was correct !!