Do I keep pushing or accept it?

[Narwhale1]

Sorry this is long…

For context, I’m 27

I had a miscarriage in Jan 2023 and since this, I have experienced the worse periods of my life and other symptoms throughout my cycle. Symptoms are below:

-period pain so painful that I almost pass out and throw up. Can not physically stand up, get cold sweats and dizziness. It’s like someone has a corkscrew and is twisting my lower abdomen. Runs all the way through to my lower back and my legs. Use tens machine, pain killers, and hot water bottles and nothing works. Have to call in sick to work every single time. - worse pain than when I had my appendix taken out in 2016.

-heavy periods for the first 2 days with lots of clotting. Needing to change pads less than every hour.

-pain during and after sex with or without orgasms. Spoke to doctors about this in 2019 and they told me I had pelvic inflammatory disease and put me on antibiotics which cleared it up. I still get pain now.

-miscarried jan 2023 and all of this has gotten so much worse.

-bloating so much that I look 6 months pregnant. This sometimes gets worse after I have eaten.

-constipated for days which then causes different stomach pains on top of the pains I already have. Then some days I have Diarrhoea.

-blood in stool and when they checked me for IBS, Crohn’s and colitis, my calprotectin level was 1600.

-been diagnosed with IBS (not Crohn’s or colitis) yet no IBS medication works included prescribed medication. There also isn’t any particular food that makes my stomach hurt and bloat.

-shooting pains in my bum when I go to the toilet.

-shooting pain up and down legs when on period

-pain when weeing (not burning like a UTI) - it’s like kidney pain but I drink like 2 litres of water a day and it’s not burning like a uti

-ovulation pain is awful as well. Not as bad as period pains but before the miscarriage I never got this pain.

-the fatigue is ridiculous. I just wanted to sleep all of the time which then gets worse when I’m in pain on my period and around ovulation.

-my hormones are all over the place. I cannot stop crying all of the time about ridiculous things. Hormone contraception makes me worse.

My doctor referred me to a gynaecologist who conducted an internal vaginal scan and told me he couldn’t see anything. He then conducted a laparoscopy approx. 40 days later which I have now had.

No endometriosis was found and when he came up to my room after my surgery, he told my mum that I “just have a low pain tolerance”. My mum was not happy with this as she has seen how much I have suffered.

Once I came around, my mum told me what he had said and I was so angry and disheartened.

I spoke to a friend who recently had the same gynaecologist as me and she said that he also, had conducted an internal scan and told her she didn’t have anything. She then saw a endometriosis specialist who did an internal scan, immediately diagnosed her and then she had her laparoscopy.

I have now been referred to this specialist and currently waiting for a second opinion.

I had the coil fitted during my surgery (on the 28th Jan) but then was rushed to a&e on the 10th Feb as it had become dislodged (after my gynaecologist was adamant this wouldn’t happen as I wasn’t 100% on having the coil). It has now been removed.

I’m really worried that this specialist will turn around and tell me that I have nothing and it’s just my pain tolerance. I don’t have a lot of faith in the nhs as I have been called a liar multiple times by doctors and then actually I was right as I know my body.

I guess my questions are, how long to I keep pushing? could it just be my “pain tolerance”? Has anyone had endometriosis missed during their laparoscopic surgery and then been diagnosed later on?

Please help me

[KittyTherapy]

Hi,

So sorry youve had to go through all of this. Please don't give up on yourself, it's not all in your head! None of this is 'normal'.

I'm so sick of the medical gaslighting 😪 and poor care.

I've read lots of people's experiences on here that their endo has been missed and some success stories seeing a specialist.

Definitely pursue with the endo specialist, i hope you get some answers and treatment.

My gynae was resistant to do any investigations for me and tried to discharge me after nothing was seen on an abdominal ultrasound. Ive had to fight all the way and be that difficult patient to get care. Its a joke but nobody else will do it for you.

Ive had my lap which did show endo but now awaiting to see specialist as general gynae can't do anything more for me and I'm having more symptoms. I've got copies of all my medical records including the images from lap which I've sent to the specialist. The more information you can provide the better.

I presume you dont have an appointment yet with the specialist? Is there a patient advice and liaison service (PALS) available who you can contact? They are usually pretty good and will contact the department with your concerns which may result in an expedited appt. Id suggest being very clear with what your hopes are.

An example could be:

Hello,

I am awaiting care from the X team. I was referred by my X in [date] due to my symptoms. I await an initial appointment but due to the impact my symptoms are having, I wish to update the team as to the nature of my condition since my referral was sent.

My symptoms at present are:

A

B

C

Id suggest explaining about impact on work.

Please can I request your support in taking the following action:

- Review my notes alongside this email to determine whether my care might be expedited.

- Contact me directly to inform me of the outcome of that decision, and my likely wait for input.

- File this email in my medical record.

Let them know if you can accept a cancellation slot/ short notice appointment.

Then provided your personal details.

Hope this is helpful! x

[Narwhale1 in reply to KittyTherapy]

Thank you so much for replying!

I’m sick of it as well! I feel like they all just think I’m overreacting and being dramatic which then makes me question literally everything.

I’m so sorry you’ve had to fight just as hard! Hopefully the specialist will help you more than the general gynae!

Getting copies off all my notes is a good idea actually. How would I go about this? Would my GP have them all?

No I’m waiting for an appointment with him. He has a secretary which my friend has told me to contact so I might get all of my notes/images and then contact her with everything using that template you have put!

Thank you so much again and I hope you get the help you need❤️❤️

[KittyTherapy in reply to Narwhale1]

Thanks lovely ❤️If you visit the hospital website where you had your lap / where you saw gynae then search for subject access request - should come up with instructions on what to do. Will probs be a form to complete.

Wishing you all the best x

[JOSANDY40]

Well I haven't but it does happen.Painkillers, inflammation, general bowel issues constipation really don't help.

There are many things you can do to help. What you eat, eat smaller amounts but 6 times a day. Wheat, lactose, Soya and fat free where possible. No fizzy drinks, no beer, no yeast.

Belladonna and Fennel for cramps.

Merbrevine Fybrogel for the bowel, up water intake. Get into a habit of giving yourself time to relax at similar time everyday to empty your bowel. If you have a tilted womb you may find pushing down to empty the bowel more difficult so try pulling the muscles up and think about pushing towards the back before you push down and forward. Thos may create movement to empty the bowel especially if you have adhesions, a ridged space in your Pouch of Douglas (this is a area between the womb/ Vagina and rectum).

There's can be a lot of misdiagnosis in including being a celiac. It is not uncommon to have several autoimmune responses or autoimmune diseases.

Myself with asthma, food intolerances, allergies including animals and tree pollen, allergic reactions to foods like banana and mushrooms, drug intolerances, Colitis and Diverticulitis. Getting diagnosed might take several attempts but you appear to have symptoms, they do appear to a Endo profile.

I would start off with diet changes to see if you can reduce the inflammation and digestion.

My best x

[Narwhale1 in reply to JOSANDY40]

Hi thanks for this.

I’ve done all of the diet changes before as they were trying to see what food affected me when they were testing me for Crohn’s and colitis. They also checked if I was coeliac as it runs in my family but I’m not!!

Just feel really drained from having so many people prod at me and do tests but then to be told it’s just my pain tolerance.

Thank you so much for your advice❤️

[JOSANDY40 in reply to Narwhale1]

Just cos you've had tests. I presume a bowel sample. It doesn't mean you don't have it or intolerance. I have friends who over the years have had several tests but finally it was positive. I can't digest gluten or lactose because of Pancreatitis from taking Danol a Steriod for Endometriois in my early yrs. So no more steriods ever!My best

[Narwhale1 in reply to JOSANDY40]

Oh gosh maybe I should be looking more into this as well then!

Thank you❤️

[JOSANDY40 in reply to Narwhale1]

It's good to know cos I want to help. I had to learn the hard way. Giving back to all I see on the Net. Still much information, still Specialists using very old info about this disease. When I first found out I was in the few with the spread beyond the pelvis. The first to take Danol, fournatly Zoladex appeared. Across the world reading the same stories, similar issues with drugs. Very young woman of 30yrs having Hysto to take immediate symptoms away only for them to return, just adding or if unfortunate added nerve pain, negative issues with hormone replacement. Hytso are the last stop. Managing this illness by pushing for your needs. Working round the illness, holding strong cos we aren't alone. Perhaps people near can't take it or friends think we a woose! People want people to want us to get better. Our better is silent, but there is ways round to ensure we can max our sexlife. Plan for the dates you can that your partner isn't told just incase you can't. Mine 5 to 7day of period, about 3 days after, painkillers taken, bowel empty. Plenty of lube off the scale. Make it special for you. Sex is never easy but one thing if you can orgasm can give release and that cuddle we need helps us feel there's good feeling, there's relax.

We are woman, we are different and we intend to fight on.

x

[raycnk]

Hi, I've had a lot of the same symptoms you have. Unexplainable pain that consultants couldn't find the cause of. Scans and examinations showed nothing. After 18 months I sat in the consultants office and refused to move so emotional. He agreed to do a laparoscopy which happened yesterday. The 20 minute procedure ended up with him pulling in another surgeon and they worked for 4.5 hours to unpick my womb from bladder,bowel,ovaries and stomach wall. When he came to see me later he was completely stunned. He validated how painful that must have been and said I was right to push.So many people have said to me it's my body and I know it best...the same goes for you. Life is not about managing pain. Have you tried prostap injections? That's a really good indicator of if the pain is gynae.

I'm sad for you

X

[Narwhale1 in reply to raycnk]

Hi,

Oh my god I’m so sorry that you weren’t listened to the first time and had to push that much!!

I’m glad they listened finally and now you have been validated.

I’ve never heard of Prostap injections? I will look into that. Thank you❤️❤️

[TwoSheepOneShoop]

I genuinely think that men shouldn't be allowed to practice gynaecology - so many stories like yours of dismissal and patronising a*seholes lording it up over women's bodies. I'm so sorry that you've been through so much pain and frustration.1) Definitely get a second opinion. You might need a new referral via your GP but if you explain the situation, they should understand.

2) Definitely put in a complaint about that Dr's conduct - very inappropriate, you'd be doing us all a favour by giving him a formal slap on the wrist too.

3) swot up by reading the NICE guidelines about endo and the process. Knowing this inside out before your next appointment will hold ALL of your medical practitioners accountable to the process they are legally bound to follow.

Good luck, don't give up. Your pain is real. You can do this x

[Narwhale1 in reply to TwoSheepOneShoop]

See I have always said I don’t understand why men become gynaecologists🙈 I do try and ask for a female every time but there literally are none around me which I find just…odd!

my GP has referred me for a second opinion so I will wait for that to come through.

I do want to put in a complaint but I was going to wait and see what the second opinion said first just incase it is just me😭

I will read up on that. Thank you so much❤️❤️

[TwoSheepOneShoop in reply to Narwhale1]

The complaint isn't about his expected outcome. It's more about his conduct: lack of bedside manner and gaslighting.

[Snowwhite2207]

Hi Narwhale1,Thank you for sharing. I am sorry you have to go through this.

I was diagnosed with endometriosis on top of my fibroids during my hysterectomy. Had 4 previous surgeries - started with chronic appendix, followed by many more related to adhesions in abdomen - on ovary, intestines ,tubes tubal abscess. Pain since the beginning of my periods. Same symptoms as yours. Ended up with inoperable fibroids - had to take Decapeptyl and had robotic modified radical hysterectomy. My endometriosis was everywhere - as all adhesions are scarring and I understand,all my previous surgeries were due to endometriosis but they never found any lesions - just scarring- which is produced by inflammatory nature of endometriosis. During my hysterectomy, my surgeon found massive endo lesion behind my uterus towards my tailbone- that's why tlmy tailbone pains and other symptoms during defecation, leg pain etc.

Just saying,that he would not know unless he removed my uterus. So yes,I believe that not all laparscopies can diagnose endo,as I had 4 abdominal surgeries prior to my hystetectomy and it was never found. And I believe endo starts more or less with your first period ( correct me if I am wrong ).

Find another specialist, don't give up and I hope it can give you a comfort that you are not alone.

By the way,I too had a miscarriage at 31. So sorry to hear about loss of your baby. I know the pain.

I never had children,never wanted hysterectomy, but it was the best thing I ever did. It saved my life and I got it back. First time since I started my periods am pain-free my anemia is gone my life has started again. Thank God !Good luck Narwhale 1.

[Narwhale1 in reply to Snowwhite2207]

Oh my god. You have been through so much!!

The more I read into it I’m seeing more and more people say that laparoscopy’s can miss it as it depends where it grows. I just can’t believe we have to go through this!!

My GP told me that endometriosis is secondary dysmenorrhea (period pain) which can start at your first period but symptoms sometimes don’t show until later on in life which makes sense for me as during school I had painful periods but they were absolutely nothing like this!!

I’m sorry to hear of your miscarriage as well🤍

Thank you so much ❤️❤️

[Snowwhite2207 in reply to Narwhale1]

Thank you Narwhale1 ❤️

Good luck with your journey. It is not easy to have this, but you will get there eventually and you'll get medical help. In a meantime, do everything you can to soothe your body from pain and don't let others get you down if you feel like they don't understand. Because they don't. They don't have this, and they truly don't. I know that now. It used to be upsetting for me when my colleauges were not understanding of my pain and especially during my periods. People who don't have this in their lives truly don't know what they are talking about .

Really hope you get help you need soon. Lots of love xxxx

[Snowwhite2207 in reply to Narwhale1]

Also Tranexamic Acid might help to manage heavy bleeding during your periods and Ponstan can help with pain. I could take Ponstan occasionally. Sometimes it made me feel very unwell. Took a lot of it. My body eventually could not hack it, now I list it as my allergy, but it did work when it did. It is great anti-inflammatory for pelvic area - especially for our reproductive tract.

Take care xxx

[E-ZEE]

Hi.Sorry to hear about your situation.Well general gyno is not trust worthy at all.Wait for the endo consultant appointment.Symptoms sounds like endo symptoms.In terms of pain try hot water bottle and tense machine options.Main thing change ur diet,such as avoid dairy products,red meat,junk food,soya etc.Dietry changes are really helpful in managing pain.Take some turmeric with warm milk ideally almond or oat milk befor bed.Warm bath with salt is good too

[Narwhale1 in reply to E-ZEE]

Hi,

This is what I keep thinking! The more I read up about it and ask others opinions it just has to be endo😭 I just want answers!

I use hot water bottle and tens machine and painkillers already they take the smallest amount of edge off but I have hot water bottle burns on my stomach which have now scarred because the pain from that is better than the pain on my period.

I rarely eat dairy as I thought that was a trigger for my IBS but sometimes I get no symptoms of anything if I eat dairy but I still only have it on occasion.

Oh I will try the tumeric thing my mum mentioned that to me as well but haven’t tried it yet.

Thank you so much❤️❤️

[E-ZEE in reply to Narwhale1]

Use hot water bottle carefully with the cover,it wo'nt give u burns.IT NEVER GIVE ME BURNS.CARE IN YOUR HANDS

[SarahBock]

So this sounds like a play by play of what happened to me, but my miscarriage was in April. And they refused to put me on the surgery waiting list for an endometrioma.

The specialist should do you right, no one had even mentioned endometriosis until I went to see them. But I’m still gaslighting myself. Ask them to also refer you to a pain specialist.

Until then, for the heavy periods, ask your doctor/GP about tranexamic acid. It’s really helped with my heavy periods, you take it for up to 3 days, 2 tablets 3 times a day. You can get it over the counter I think.

Good luck with the specialist, try and remember you’re not alone in this. 💛

[Narwhale1 in reply to SarahBock]

Bless you I’m so sorry🤍

It’s horrible that we gaslight ourselves so much isn’t it!! I can’t believe they refused to put you in the waiting list! I will check about pain specialists and see if they can help me.

Yes I’m on tranexamic acid at the minute and it’s helped with the heaviness. I’ve also been on mefenamic acid for the pain but it did literally nothing😭

Thank you so much. Good luck to you too❤️❤️

[SarahBock in reply to Narwhale1]

They put me on amatriptoline, which really helped the chronic pain and actually my mental health! But it dried out my throat and my vocal cords so I couldn’t talk lol. I’m now on duloxetine which seems to be good! Do not get a caudal epidural, it’s is not ok.

But before any of that I had the laparoscopy, really long healing process but I was able to actually walk around without being in pain.

[Narwhale1 in reply to SarahBock]

I’ve been on Amitriptyline for my IBS but stopped taking it because I kept getting weird dizzy spells. Maybe I should try it again! Xx

[I-dunno]

Hi there

It’s sounds horrendous your symptoms and pain and treatment.

I just had a 12cm cyst removed around 3 weeks ago.

I had to fight to get this sorted was left for over a year when it was over 10cm and I already have a disability.

My mri showed adhesions and some issue with the pouch of Douglas. I get severe pain in back passage when trying to pass wind or go no 2 when on my period

And ovulation is very painful

I’ve had two natural births and this ongoing pain is bad.

I also get a lot of ripping pain in the front like the womb bladder area and it’s very deep.

I am going to fight because when they went in they took out the cyst saved my ovary and tube but said I was clear. However I’ve had this pain before cyst and after removal. I believe the endo is where they cannot see and they would have to do an empty maybe of bowel to see it if it’s right at the back. Hence why maybe the lady who had a hysterectomy only then they saw because they had to go deep.

I think it just confirms what you know about your body

Believe in yourself don’t let them get in your head

Do as much research for some relief

I use tumeric

Epsom’s salt baths - 1hr sorry it gets in places you can’t reach

N- acetyl cysteine enzyme

I think it’s helped for surgey but I will ask for specialist

And maybe see if there is a way to look inside without taking all my guts out.

Will do some research.

Keep your chin up

You will reap the fruits of your labour. X

[Narwhale1 in reply to I-dunno]

Bless you. Sorry you have been through so much!

I believe that mine also is somewhere underneath something and maybe was missed or hard to see. Definitely try and fight it because we deserve to know what’s happening with our bodies!

Thank you for the advice. Good luck with everything ❤️❤️

[MontsJ]

Gosh I’m so sorry you are going through all this. You certainly sound like you do have endo, keep pushing and when you do get diagnosed feed back to PALS about this initial consultant you saw as this misdiagnosis has to stop. I know most doctors can’t diagnose endo by ultrasound, it sounds like this second opinion will be with someone who can. Dr Jukovic at The Endometriosis Centre in London is able to diagnose by ultrasound.

Good luck lovely x

[Narwhale1 in reply to MontsJ]

Thank you so much!

I’m quite far from London but I have had people recommend people in London before so that’ll be a last resort if no one local to me can help! ❤️

[Tttt4444]

after my endo surgery when I still had pains my doctor told me it would be from microscopic endo that can’t be seen during the surgery….u may have that

[Narwhale1 in reply to Tttt4444]

This is what I’m thinking. My friend also told me that hers was really hard to find and was in the pouch of Douglas and behind her uterus which would explain my back and leg pain as well! I will see what the second opinion say!

Hope you’re okay❤️