Please I need some answers

[Notebook88]

Hi everyone. I’ll try and make this as clear and concise as possible.

I am wondering whether I have endometriosis or a gastro issue. Everything up until this point, I have researched, read and built up as much info as possible so as to not get fobbed off by professionals and to try and get to the bottom of what’s going on.

Since late Dec 2019, I have been very poorly. I woke up one day and haven’t been the same since. I woke up and had extreme nausea followed by a severe burning sensation in my lower abdomen. I was in pain every time I ate anything no matter how small. The pain came as soon as I would put food in my mouths. The pain was still in my lower abdomen.

This lasted for a few days, completely disappeared for three days and then came back even worse for a few days. It disappeared for two weeks and then came back but didn’t go away.

What I noticed is that it all started the day before my first period started, 5 months after my second baby (I was breastfeeding for the first 5 months).

When I had respite from the burning I then developed hip pain, shoulder tip pain, pain near my Fallopian tubes. I made a pain diary and everything would be cyclical and start before my period and got worse around ovulation but as weeks went by there was no respite.

It’s been almost three months now. I’ve had to be proactive with help from the drs. I’ve seen 9drs and I’m seeing two specialists; a gynaecologist who is useless and a gastroenterologist.

I’ve never suffered with cramps and the pain I experience isn’t cramps but a burning sensation. I’ve been tested by my GP for urine/bladder infections. I’ve had a scan and they said ovaries and womb/Fallopian tube is normal.

I was thinking it might be intestinal or bowel endometriosis but it’s all a bit confusing. My periods are not heavy and some of my symptoms do not match up except for the cyclical pattern. I get awful awful nausea just before my period.

Now to the bit that throws it off. My calprotectin levels are high, I have dark tarry stools and I’ve lost weight and not gaining. My intestine area hurts so bad and I’m in pain whenever I eat. It’s affecting my life . I’ve explored the gastrointestinal route so having an endoscopy soon as well.

Does anyone have similar or know if it’s an indication of endo? I know that to officially know you need a lap but I just wanted to know other people’s thoughts about whether it sounds like endo.

I’m 31 years old and have always had regular periods. When I gave birth to my second child I did have retained placenta. All this happened when I first started my period way after birth. The radiologist was very dismissive without knowing all the details and and doubts there are any issues regarding my reproductive organs. The nausea and pain is new but what makes me question if it’s endo is the calprotectin, dark stools, losing weight and pain when I eat/burning pain.

Thank you.

[Afrohair]

Well your symptoms sound like endometriosis to me one of my first symptoms was feeling full after small amounts of food I soon found out it was bloating and maybe certain foods trigger it on top of that I thought I was fat not bloating I have since lost loads of weight from cutting out certain food I also have a burning sensation in my appendix and feel like vomiting on my period I also get burning pain which I think is near my Fallopian tube and in my pelvis but mainly the burning can be on my vagina or areas of pelvis this can alternate areas I don’t think this is to do with birth unless you may have had a c section like me endometriosis can be caused if everything gets sewn wrong they can implemant the endometrial tissue which I think has happened to me but can’t be clear cut on that jus my symptoms started after birth but there is little evidence on this I only found one article on endometriosis on a cezerean section it can obviously get worse and move to other areas I also have issues with my bladder need to pee a lot at night like intestinal cystitis I have it more on my period or run up to it x

[Notebook88 in reply to Afrohair]

Thank you for your reply. It’s very bizarre because It feels like gastro issues that are cyclical. I don’t have pain with intercourse or any of the obvious symptoms. I just woke up one day and have been in pain ever since. I had an induction but vaginal delivery. I don’t get It I was fine one day and this happened all of a sudden it’s completely messed with me so much.

How are you managing it? The 9 drs I’ve seen have no clue which category my symptoms fall under.

[Afrohair in reply to Notebook88]

My symptoms were sudden too it started in April I was decorating the next day I had terrible pelvic pain I couldn’t get out of bed and it carried on during this time I had sciatica and bloating my belly looked weird I kept telling everyone something is not right with me and it affects me daily I started researching my symptoms and it kept pointing to endo I didn’t have painful sex to begin with but on occasions I do now but not often as I do internal pelvic massage which helps so I don’t have pain sorry for tmi.

[Afrohair in reply to Notebook88]

If you think it’s endo asked to be referred to a specialist if you follow my posts you will see I’ve been through it all I’ve come to terms with it now I just want to be seen by a specialist but the nhs takes forever and I was working a decent job now I can’t bend hardly or lift feel like my life is on hold and I’m trapped in someone else’s body I don’t like who I am anymore

[Notebook88 in reply to Afrohair]

This is EXACTLY how I feel. I feel like I’m trapped in another body and it’s not my body. It’s affecting my emotional health and I’m a psychotherapist!!!

I think I’m going to look into an endo specialist myself once I’ve been through the gastro route because I have sufferred with so much. I have two very small children and no family support or help not even emotional support. My husband helps a lot but our family is pretty useless to be honest. I didn’t get this after my first child it’s just so sudden.

[Afrohair in reply to Notebook88]

I have children aswell I’ve had to change my shifts at work because I can’t lift anymore and have a lot of pain I was supposed to get married this year and nothings been planned cause im so poorly.im always trying to chase docs for answers I saw a private specialist and asked the doc to refer me to them he said I’ve got endo for sure all g.p did is refer me to a useless gynaecologist with no experience I’ve been like this a year no I lost a baby in that time and I’ve had no support whatsoever I’m constantly telling my current children I’m sick and I’m fed up of it I don’t have support either just my partner who’s away on business at the minute thing is you might have had it but didn’t know like me I didn’t know I think I’ve had it longer but I didn’t no if you were pregnant it masks symptoms and it does get worse after pregnancy from mine and a lot of other peoples experience

[Notebook88 in reply to Afrohair]

I feel like we have the same experiences. I’ve read a lot about endo as it’s the first thing that came up when I was researching but the bit that is confusing is the dark stools that look like car oil and calprotectin levels.

As you can imagine and I’m sure been through as well, a range of emotions. I have been so scared and developed panic attacks because of worry. I want to do so much with my children and I’m scared I won’t be able to. I to keep telling my eldest who is 4 that I’m ill. My life has just changed completely. I can’t plan anything or know how I’m going to feel from one day to the next. No one in my family have this either.

[Afrohair in reply to Notebook88]

With endo people are between hard stools or the other way I understand that feeling one day I will be fine not the next I don’t plan things anymore other than a work day once a week I no longer work long hours

[Notebook88 in reply to Afrohair]

I saw on your profile that you have been dealing with this for three years. How have you been managing it? What is your plan with regards to specialists?

[Afrohair in reply to Notebook88]

Well I think I’ve had it for 3 years but symptoms started more noticeable last April I’ve since been referred for a laparoscopy for treatment but I’m only just beginning that process like you I was sent for ultrasound scans several times and nothing showed up endo Dosent show up they then offered me a lap with a general gynaecologist but they don’t have experience so I said no thankyou I need a specialist and they wouldn’t refer me to one so I asked a private specialist to write to my g.p for a referral on nhs I’m now waiting for it to be accepted I don’t really cope I’m very anxious and depressed feel like my life is on hold and have some very painful days and some ok days I changed my diet and manage it with supplements and pain killers I’m told there is no cure so I have to hope it goes into remission

[Notebook88 in reply to Afrohair]

I understand you completely. It’s the uncertainty and not knowing as well. Not being able to live the life as it once was. I really hope things move swiftly for you.

[Afrohair in reply to Notebook88]

Right the nhs are so slow so Dosent help it only gets worse with time so I’d get into them much as you can I’ve got to a point where I’m fed up of visiting my g.p cause all my symptoms like you don’t always match up so it’s all related to endo and that’s what needs fixing it’s frustrating and I can’t afford private I got a quote of 6,600

[Notebook88 in reply to Afrohair]

I’ve always had to fight with GPS for various reasons and I’m just losing the fight now tbh. I had to be persistent with them due to my baby having allergies and them not believing me.

Just feel like I’m in limbo. The 9 drs I’ve seen were the gps. I will ask them to refer me to an endo specialist in the mean time whilst I see a gastro as well. I absolutely hate going to the drs now. I’ve been seeing them pretty much every week since jan.

[Afrohair in reply to Notebook88]

That’s what I’m like it’s like they recognise you and I know what you mean with kids I think my daughter has had an allergy but we can’t get to bottom of it only thing what soothes her is piriton and some cream they gave us but she screams all time at night .im like you I’m fed up they will say you only had appointment last week well it’s because they don’t let you discuss everything on one appointment so you have to keep booking more appointments.they didn’t even offer support when I was pregnant with endo I had to wait till I was 13 week and my baby had died by then they treated it as normal pregnancy

[Notebook88 in reply to Afrohair]

Yh exactly and because you can’t even discuss your issues properly due to the limited time, they don’t get a full picture. One dr thought it was indigestion 😒

Have you eliminated dairy and soy for your child?

[Afrohair in reply to Notebook88]

No I’ve not docs said she’s anemic but she itches at night can’t get to bottom of it she Dosent always have a rash but itches .they just put her through a blood test a week was ridiculous

Oh god indigestion pmsl 😂

[Notebook88 in reply to Afrohair]

Poor thing, hope you get to the bottom of it.

[theorah]

Hello

To me the dark tarry stools and losing weight very much indicate a bowl problem rather then endo.

I'm no expert, but I have a friend who has Chron's disease- she has flare-ups that can last for months but then be gone for another few months. During her flare ups, the pain and stomach problems tend to be worse coming up to her period for some reason, although they're still constant in general. But the endoscopy should definitely rule things like that out or rule them in, so good to know you've arranged one soon!!

[theorah in reply to theorah]

Hello again- everything I'm reading up says if you have black tarry stools and burning sensation you should be getting things investigated as quickly as possible in case there's an emergency situation. I don't want to sound stressful but I'm concerned you won't get an investigation quickly enough in the right areas- have you considered calling an ambulance or going to A&E so you can get a colonoscopy specifically and more immediately in case this is something that needs to fixed asap?

[Notebook88 in reply to theorah]

Hiya,

I’ve been A&E twice and out of hours last month. They refused to do anything. I know it could be related to IBD and have had many other stool tests to rule out bacteria. I have the endoscopy soon within this month. I’ve had to be the one to order tests from the drs and do my own investigations because it’s like talking to a brick wall with them. I really feel like I’m trapped in a body that is not my own.

[theorah in reply to Notebook88]

Your doctors sound so useless, I'm really sorry you're having to deal with so much trouble over something that's so obviously causing a lot of pain and stress. The lack of empathy or initiative from some doctors astounds me.

I really hope the endoscopy is helpful, its sounds a lot like the kind of issues my friend with Crohn's has had.

[Busy-Lizzie]

Hi,

Sorry to hear things are so rough.

Have you had stool samples tested? Particularly if you have dark, tarry stools, this would indicate bleeding from somewhere in the gastrointestinal tract.

I've never heard of raised calprotectin levels being an indication of endometriosis: they are associated with inflammation in the bowel, usually in relation to inflammatory bowel disease.

Bowel pain when eating can also be related to diverticular disease.

Weight loss and blood in stools are symptoms thst need to be taken seriously and investigated.

Usually a gastroscopy (camera down the throat to look in the stomach and upper part of instestine) and or colonoscopy (scope inside the bowel) would be done for stool samples that test positive for blood and weight loss.

[Notebook88 in reply to Busy-Lizzie]

Yes I’ve had loads for helicobactor, campylobacter etc. I’ve been hot on it these past two months requesting blood tests and stool tests whilst waiting for the refferals to specialists to try and identify what’s going on. What’s strange though is aside from the gastro issues, I get hip pain, pain in my ovaries ( radiologist told me I don’t know where my ovaries and was super dismissive because I look very young for my age and just treated me in a condescending way). I also get horrible nausea just before my period but also comes into though out the month too. I’ve never had these symptoms before. Just started in Dec after my first period.

[Whoisthis]

Hi, I can see you are getting lots of support here. Sounds like endo to me as well.

But please when you do see a specialist don’t forget to mention the retainer placenta. I had that with my second birth 12 years ago and everything started from then onwards, retained placenta is rare and I to this day will swear it’s what has caused my endometriosis journey.

I’m seeing a specialist tomorrow and it’s on my list to ask about.

The Gastro issues all sound familiar and I have confirmed endometriosis.

Keep going m, it’s disgusting it takes so long but really do kick up a fuss over and over again it’s the only way.

[Notebook88 in reply to Whoisthis]

I did mention the placenta to the gynaecologist and radiologist but they were really useless. All my life I’ve had to persist with GPS etc for various reasons to do my kids as well and it’s so frustrating. Just treated like a number.

[Whoisthis in reply to Notebook88]

Where are you based? Can you go private at all?

I’m sorry the NHS is useless x

[Notebook88 in reply to Whoisthis]

Midlands. I’ll look into it but want to see what gastro people say first. X

[justmai]

I would sY its gastro as it occurs after eating might have ibs or something similar you need to see a dr

[Notebook88 in reply to justmai]

It’s not IBS. Calprotectin levels dont spike with IBS and you don’t lose a tone of weight or get dark tarry stools. I’ve seen 9drs already.

[JOSANDY40]

Hi, Well have plenty of tests, keyhole surgery to have a look. Ultra sound with a radiation imagine liquid into you vagina. Keep a diary of periods, pain and ovulation. Take painkillers which are anti inflammatory. Like Ponstan 40.

Some Endo can be seen, some can not. There are 3 types black, yellow and Red. There can be cysts as well.

You could have food intolerances as well. Stress makes in worse as do hormones. The disease love Estrogen. If you are diagnosed with Endo then there are many things you can do to make things alittle better. The most important thing for me was excepting it as part of me, living within its behaviour and working round a new life style.

My best wishes xxx

[justmai]

Have you been checked for bowel cancer? although if its dark blood its coming from stomach, or higher up in colon,

[Notebook88]

I’m having checks soon. X

[Parvez_66]

Probably endometriosis.and 2 months a go a had same problem,and after I tried moringa tea ones a day believe me no pain at all since past 2 months tried this

[Notebook88 in reply to Parvez_66]

Where do you get it from? So I have a link please?

[Parvez_66 in reply to Notebook88]

Marche tau in Laval or Montreal

[Parvez_66]

Any organic store or online

[anotherworrier]

You are absolutely not alone! Some of this I could've written myself! I started throwing up the day before I came on, felt ok ish on day 3 and since then I've just not been able to keep anything down. Day 4 (Sunday) I woke up with the worst pain in my stomach I didn't want to breathe never mind talk, this made me sick and I just haven't been right since. ?Yesterday was the first day I was able to keep water down. I went to the GP and they said it's likely a bug and my immune system is just struggling to fight it off. While I was there she showed me a letter from the hospital saying they found cell changes consistent with endo. I've got an appt in April but I've been driving myself up the wall with research. So many things I've read I'm like yep, that's me.. and so is that.. and this!

I was told in the past it couldn't be endo and I probably have PCOS. However aside from heavy periods I don't have any other signs of PCOS.

I get those stop you in your tracks sort of stabbing pains throughout the month which I first thought was ovulation pain but it happens randomly so it can't be that.

Along with the nausea and vomiting I've got pain in my abdomen, hip and leg. Hip and leg pain is so bad I can't lie on my right side for more than a few seconds.

Sorry for droning on a bit there - but you're not alone! The pain side of it sounds like endo but the other symptoms you're experiencing could be from another issue that's hitting you alongside the endo. I'm still doing my research xx

[Notebook88 in reply to anotherworrier]

Thank you for your reply. Yes my research has got to the point where I’m re reading everything because there’s nothing left for me to research. What was it that you said regarding cell changes?

How long has this been going on for you?