constant pain : I have spoken to a doctor... - Endometriosis UK

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constant pain

lea2001 profile image
lea2001

I have spoken to a doctor and had an ultrasound done but came back as no sign of endormetriosis. but what I wondering is if anyone else is in constant pain in their stomach and ovarian (bikini line) area, it like changes between a stabbing and cramping kind of pain

32 Replies

Hi!!

I had 4 ultrasounds that all came back clear before I managed to get referred for laparoscopy.

Turns out my bowel was completed bound to my wall, I had tissue and adhesions everywhere.

Adenomyosis, and now just been referred for MRI and then full hysterectomy.

Listen to your body! If you know something isn’t right keep pushing.

It’s very rare endometriosis shows up on an ultrasound.

Xxxx

lea2001 profile image
lea2001 in reply to JH21

thank you for your help and I hope you're surgery and MRI go well. it so sad to hear about your hysterectomy

JH21 profile image
JH21 in reply to lea2001

Luckily for me I have already been blessed with 2 amazing healthy boys. It’s a shame I'm only 29 but, I’d rather have a hysterectomy and enjoy the children I have, Then live a lifetime of constant pain.

It’s a real up hill struggle but honestly, stick at it. You know your body. Don’t suffer in silence. Be persistent with your GP.

I wish you all the luck in the world! Xxx

lea2001 profile image
lea2001 in reply to JH21

that's so amazing! I'm going to stick at it once the reception reopens on Monday

JH21 profile image
JH21 in reply to lea2001

Absolute worst case scenario, if they won’t refer you. Pay privately to see a gynaecologist specialist

. You pay once for a consultation then they refer you back to NHS for treatment.

Shouldn’t be that way but it’s worth the consultation fee. Xx

lea2001 profile image
lea2001 in reply to JH21

thank you so much for the help.

JH21 profile image
JH21 in reply to lea2001

No worries huni! Always here if you need anything x

Hey, you need to keep going back. Endometriosis can only be diagnosed via a diagnostic laparoscopic surgery as it does not show on ultrasound. If they see signs of disease then they will remove it at the same time and discuss how to manage your pain after surgery :)

thank you for your help, is the surgery painful?

It’s not that bad as it’s done laparoscopically but you do have to rest for a few weeks after as it is deemed major surgery. You need to ask for a referral from your GP to see a gynaecologist, explain your symptoms and ask them about endometriosis...they are the ones that can put you forward for the op. I’m waiting my second one (sadly endometriosis grows back) and I have it quite severely aswell as a growth in my womb a little larger than an avacado plus the usual cysts. Endometriosis is horrible & interferes with your whole life but it’s a relief if you get a confirmed diagnosis so you can start managing your symptoms. I hope you get further with the GP and can get to the bottom of it, don’t be afraid of the surgery. I’m more than happy to answer any questions you may have and will try to help best I can x

is the pain more manageable after the surgery? when you say rest for a few weeks does that include not being able to go to work, and not even light exercise such as walking? I get the occasional cysts as well. I just want a diagnosis for my peace of mind and to get rid of my frustration towards it all. do you find that headaches could be part of it as well?

The pain is more manageable after the surgery, the first few months for me personally were absolutely bliss! I took a couple of weeks off work as it involved heavy lifting, I also had an elderly dog with my partner and started gentle walks a couple of days after surgery....I was just a bit slower than usual as it was still sore. If your more of an office job then you would be alright to return after 7-10 days depending on how you feel. Cysts usually go on there own but some need keeping an eye on if there a certain size (just an ultrasound scan for checking) I would put headaches down to hormones more than anything. Have you had regular bloods? Becoming anemic and having low b12 are quite common with endo because of the blood loss x

the surgery does seem to have its pros, I work as bartender so I would probably need more than 10 days I'm guessing. yeah my cysts do normally go by themselves after a week. the last time I had my bloods done they came back clear, I don't bleed heavily when I'm on my period which is my only bonus during that time.

Ok yeh I would say a couple of weeks rest and recuperation possibly even 3. Blimey your very lucky! I lose my weeks worth in 1-3 days and am very poorly with it (it’s a separate condition but linked). What sort of pain relief have you tried so far? How debilitating have you found the pain?

christ that's a lot of time off work. when I first started my periods I was very heavy and bled twice a month sometimes and that led to anemia at one point. I have menfamic acid to help with the pain and take that regularly but more on when I'm on my period. My pain isn't as debilitating as it used to me, I still find it difficult to be upright on the first day.

It is a fair amount but do remember it’s major surgery and if they find evidence of endometriosis then they will remove as much as they can during the op. I felt quite tired and sore for the first week and needed the time to build my strength back up.....everyone’s different tho. Everyone was surprised at how quick I pinged back despite it being a good 2 weeks, I also had a hysterescopy (not hysterectomy) at the same time for the growths so that could be why. Iv had the mefnamic acid and tranxemic acid, norethisterone, tramadol, oramorh, co-codamol 30/500. My main relief sadly is the op which will last me 5-12 months before I start getting severe again. Iv been severely anemic for a few years now needing blood transfusions and b12 injections....I’m bedbound more often than not and it makes me feel pretty miserable. Hot water bottles ease my pain the most but Iv burnt so severely Iv ended up having blisters lanced, drained and dressed. This is honestly a horrible disease 👎 have you got a good GP? It took 14 years before I was finally diagnosed by the op and I got a good female doctor x

that sounds absolutely horrific, I'm so sorry that you have to go through that, it really does suck being a woman. when first came off of the pill I was bound to the toilet and my bed for a while when I was on my period, I just read on here that someone with severe Endo swears by BEYOU monthly patches (amazon) and they relieve pain for 12 hours if you want to check those out. My GP changes each time I go for an appointment because its such a busy practice where I live.

Thankyou yeh it was when I was figuring it all out pre diagnosis, annoying and embarrassing when the ambulance was called monthly (sometimes more)....I collapsed at a job interview before they even opened the door to me too. I find social life hard because it’s worrying and scary for friends that haven’t seen me at my worst & don’t know what to do, my partner of 10 years would get scared and he had seen it all before. The hospital pushed me to go on the pill and have a coil because it would “stop symptoms” I see these as merely a plaster covering up the root cause rather than addressing it....you then have to possibly try multiple forms before you get the right one for you and if you plan on having a family, it could take 12-18 months for your body to settle from the hormones. When your in your late 20s to early 30s, time isn’t exactly on your side and to be truthful I prefer to have the cause of my symptoms sorted out properly instead of disguised with synthetic hormones, all personal preference. I respect anyone that decides otherwise as it has to be right for you x

that sounds so intense and scary. my friends haven't seen me when its really bad either and I wouldn't want them to because its disgusting, I also sweat profusely when I'm no my period which is gross. I've been offered the coil and I'm still apprehensive about it because I just don't like the idea of it and I can't go back on the pill because it affects my mental health badly, I have been on different types of the pill since I was 13 and I'm now 20 and came off when I was 18 I think.

I can totally relate to the sweating, I get them hot flushes that are so severe it makes me physically faint & vomit....I sweat profusely like yourself but need to remove my clothing to prevent fainting. It happened once on the motorway, I knew it was coming as it got more intense so I took the next exit and stopped in the lay-by...opened all the windows & doors and removed my clothing but was still sick (bear in mind it was winter -4 degrees) Had to call for help and get myself, the kids and car collected. It just makes me feel so so poorly and then exhausted after the hot flushes calm down. What your saying about the pill is partly why I have avoided it my whole life and the fact that il probably end up in hospital if I came off it. Iv known people to have the coil with many negative effects and they don’t have endometriosis....there’s always the risk it won’t help and there would still be more intense symptoms of endometriosis when it’s removed because it’s basically your periods starting again and your body needing to settle back. I can fully understand your worries about the coil but I also think you should consider the pros and cons......for myself there were too many cons and worry’s (especially about needing it removed) plus I had been referred urgently for ivf in 2019 and I would of had to wait for my body to settle before I could start treatment had I of had the coil. x

that sounds so so intense, the sweating and hot flushes is what pisses me off the most because I can't stand being warm at all. I am certain half of my colds in winter stem from being too warm whilst on my period. that kind of why I don't want it because I know that it will affect my body badly and will make the symptoms worse when I eventually come off of it. x

Listen to your body, you know it best and don’t let any of the doctors/specialists push you into treatment if you don’t feel it will be right for you. I remember hearing the annoyance in my specialists tone of voice when I put my foot down but it’s me that would of suffered ultimately through her advice and I’m glad I stuck to my guns. Iv not experienced anything worse than endo symptoms without having the effects of contraception and I couldn’t think of anything more worse myself x

when I next talk to a doctor I'm going to stick to my guns and try and get referred to a gynaecologist

Endometriosis is a chronic and progressive disease so the sooner it’s diagnosed and treated (if you have it) the better you will start to feel. Then itl be about managing your symptoms , I do hope you get on ok and will always be happy to chat any further :-) x

thank you so much for all your help

Hiya, so sorry the scan you had wasn’t helpful. Endo doesn’t show on an ultrasound, the only definitive way to diagnose it is a laparoscopy. Can you get a referral to gynaecology so they can look into it more for you? Regardless of endo, if you are in pain then you should be seen!

lea2001 profile image
lea2001 in reply to b_bart88

thank you for your reply and help, how would I go about getting referral to a gynaecologist?

Yes I do, I've also had an ultrasound and an MRI scan which have come back clear and "no evidence of endometriosis." But please don't let your doctor or nurse push you out of getting the surgery, that's the only way to know for sure.

Good luck! Xx

lea2001 profile image
lea2001 in reply to Ruralquirks

thank you!!

CatherineEndo profile image
CatherineEndoModerator

Hi,

You can ask your GP for a referral but they'll probably ask you why you want one.

You may find this page on talking to your GP for a referral helpful: endometriosis-uk.org/visiti...

There is a pain and symptoms diary that can help you to advocate for your needs.

There is also information about what to expect after a laparoscopy here: endometriosis-uk.org/your-l...

I had my laparoscopy in November and I was in bed for about two weeks afterwards and took it easy for maybe 6 weeks. During the first two weeks, I needed quite a bit of help getting in and out of bed and moving around just because it hurt. I also slept a lot and took pain medication. But I felt more myself soon enough. If you can, talk to family and friends about helping you out if you are sent in for a laparoscopy. Now I feel better than I have in years, my pain is more manageable.

Good luck! and I hope this information helps.

unless you have endometriomas (cysts), nothing will show. My ultrasound showed cysts but nothing else. My MRI showed them too but also deep infiltrating endo, endometriosis in my pouch of Douglas, ovaries stuck together, adhesions everywhere and bowel involvement.

Its shocking how many women are still fobbed off with a clear ultrasound when it is so well known that it means nothing.

be a pain and keep going back until you have a referral.

yeah I feel like I've been fobbed off but I'm going to make an appointment and keep going back until I get a referral

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