Can anyone help me explain this? - Endometriosis UK

Endometriosis UK

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Can anyone help me explain this?

LoLoLeanne profile image

Hello,

I have already been diagnosed with Endo and I had a laparoscopy last year and they removed the endometriosis. Since then the pain has not improved, so my doctor put me on the pill full time (no break) instead of 3 packs back to back and then a break. Still the pain is awful, I have co-codamol. Can anyone explain to me why I am still getting awful pain, and am bleeding a lot even though I’m taking the pill continuously? I have gone to my doctor and he said I shouldn’t be experiencing pain because I have had surgery so there’s no reason for it? I also suffer with PCOS. He discharged me from his care because of this and advised me that I get referred to gastroenterology. I went to my GP and asked for a second opinion and now I am waiting to have ultrasounds at a new hospital. But I was wondering is anyone could give me some reassurance or clarity.

Thank you!

23 Replies

Hey I was put onto several different pills without a break and it made no difference to the bleeding. I still bled continuously. I was told that this is because of my adenomyosis. I still got labour pains which they have said is down to my endometriosis. Also had 2 ablations and still bled. It’s a bloody nightmare. Even tranexamic acid which is suppose to sort the bleeding right out didn’t work for me, northisterone made it lighter though.

On decepeptyl injections and this has helped with the pain and bleeding although still have some blood.

Have you tried tranexamic acid or northisterone? The doctors can’t leave you to bleed, it needs dither investigation.

I have bled so badly that I now need a blood transfusion.

Please pursue the doctor as it’s no way to live xx

Thank you so much! Actually yes I have tried Tranexamic Acid for a skin condition I have for some reason that was supposed to help control my autoimmune skin condition but it also did nothing to help that nor my endo xx

I also just can’t find anyone to take my condition seriously! They all say I’m not supposed to be in pain so it must be psychological:’( I already have mental health issues so it doesn’t take much to make me believe them but honestly the bleeding surely isn’t in my head 😂

Hello sorry you are going through this and feel you are not being believed. How old are you?I am 39, my problems started when I was 35, I became very ill very quickly and think that is why I have been treated seriously and my doctor is fantastic. However in the past I have had health problems and they were never looked into. Don’t know why some doctors don’t seem to want to help or think we are making it all up.

You said you are getting more scans, do you have a date yet? Are you getting an MRI?

I was diagnosed via MRI for adenomyosis, this also gives me bowel problems. Do you suffer the same?

X

Yes I have extreme bowel problems with bloating that I look pregnant etc. Very painful when having bowel movement or even urinating and also sex. Which is actually having a toll on my relationship now. I am 22 in 3 weeks. I am only having external and internal ultrasounds. Diagnosed last year then discharged beginning of this year. Now waiting for ultrasounds with new endo doctor on 7th July. Xxx

Yes I also go through the stage of looking pregnant, my belly swells up so much 😢sex is also painful for me as well as a smear test, you definitely need more investigations. Let us know how you get on x

I will thank you xx

I was told I had IBS and PID before they finally diagnosed it as endometriosis I still feel 24yrs later I'm not believed to the point I will actually say that too them 😂

Yeah they did the same with me, stupid idiots arghh

Sorry for jumping on. I was not aware that adenomyosis gave bowel pains. How are the 2 interacting? I have had excision of endometriosis a year ago, folllowed by a colonoscopy due to ongoing cyclical rectal bleeding, when they diagnosed it as hemorrhagic colitis with neovascularisation. I went downhill rapidly in 2019 to the point that I put myself on a strict exclusion anti-inflammatory diet which helps as at least I am not emptying myself several times a day, above all when being at work. Despite these 2 surgeries, I am still on this diet and it looks like it is for the rest of my life. Painwise, yes I have bowel pains. I feel that my abdomen is a bit like a 70's disco when you have spotlights going off a bit everywhere, well this is my stomach. I react to ADs, anti-inflammatories... so I am not a good customer for pharmaceutical companies. Due to not sleeping well and being awake every night, I am now starting to take regularly some light CBD. I find that it really helps with the pain and also the very long term sleep issue. Yes, my abdomen swells in the evening too. I am an older woman as the GPs delayed and blocked my medical care for a good decade. They get away with it, I did not.

Tranexamic acid seems to be rubbish lol

Hi sweetie, is the gynecologist you see an endometriosis specialist? Or is the hospital registered BSGE endometriosis Centre? If not then I've heard lots of people say that surgery did not improve anything for them, purely because gynecologists with not enough knowledge of endo have done the surgery, which means they leave things behind or miss them completely. Xxx

LoLoLeanne profile image
LoLoLeanne in reply to CryBaby91

Okay that makes a lot of sense. I had it done by someone who worked for the NHS and for private hospitals? I had mine done in a private hospital for some reason but by the nhs. I don’t think he was an endo doctor because he doesn’t seem to understand that pain doesn’t correlate with what stage you are. He said that I was superficial and so I shouldn’t have pain but idk xxx

CryBaby91 profile image
CryBaby91 in reply to LoLoLeanne

Yeah he doesn't sound like a specialist, I've seen many general gynecologists do more harm than good with complex cases of endo! You can do a check of where a specialist centre is near you by going on Google and putting in "BSGE endometriosis centre register". Then you just put your postcode in and find ones near you :) you can then Google specific consultants and see who is the best fit for you :) I did this and went with someone who is actually further away but he is more qualified than the closer one. If you're having bowel/bladder issues then you should be seeing a proper specialist, a general gyne really has no clue how to deal with endo on the bladder or bowel! You need a proper team.

Ugh I hate doctors like that! My general gyne tried to tell me that endometriosis can be diagnosed on an ultrasound, back pain isn't a symptom and you don't get blood in your urine during your period. All of which are false. My specialist was disgusted and spent half the appointment shaking his head and fuming at how I had been treat so far, he couldn't apologise enough and put my mind at ease that the consultant was talking out of his arse 😉 so don't lose hope babe, the right doctor really helps! Xxx

Hello LoLoLeanne,

I am seven weeks post surgery and I had my first flare up Monday passed - even after being cleared. I am still experiencing the same level of pain that I did pre-surgery. As others have discussed above, I have managed to find something to stop my bleeding but nothing to relieve the pain. I had an IUD fitted almost ten years ago and I’ve barely had a period in that time. But even though I don’t bleed anymore, I do still experience regular pain flare ups.

I am also concerned that my surgery has been a waste of time considering that I don’t feel better in the slightest. I wondered if this was because my lap was a “cavity” investigation so to speak in that my surgeon checked my pelvis, abdomen and my uterus etc but there are limits to what they can investigate. I’ve had doctors tell me that there’s a possibility that endo can grow in organs/systems within the body and I truly believe that my endo is within my urethras/potentially kidneys and that it could potentially be sciatic too.

My last surgery was with a private consultant - who was fabulous! But I am waiting to speak to my NHS gynaecologist about seeking an MRI to investigate the other issues further. Although, I could be waiting some time.

I’d be interested in what others have to say regarding this too. I hope you find some resolve and that you manage to get to the bottom of things sooner rather than later! x

Unfortunately, endometriosis isn’t cured by removing it. Essentially, that’s like clearing up a puddle and saying the leak is fixed. Your Doctor should know better. I’m so pleased you’re going elsewhere. I hope they manage to get it sorted for you 💛

Hello! Sorry you are going through this. I still suffered with pain when I was taking the pill back to back (for about 4 years) and also in the year and a bit after my laparoscopy (Feb 2020). Like your experience, GP’s just fobbed me off saying I shouldn’t experience cycle pain when on the pill back to back as I shouldn’t be ovulating and was also discharged from gynae after my lap even though I said I didn’t feel my symptoms had improved. I’m fighting at the moment to be referred to a BSGE centre as the pain is having a massive impact on my life as I’m sure you experience too.

Take care xx

LoLoLeanne profile image
LoLoLeanne in reply to ailis95

Thank you so much this is honestly such a relief to know I’m not alone in this because none of my friends nor my family have any idea what endo is and the effects it has on my life! They don’t understand and are like just get on with it 😤

No, you are definitely not on your own. Endometriosis affects girls and women from 9 to 79, very sadly. It is a shame that men do not suffer from it... I am sure the budget for research would be trebled! Its a question worth asking GPs just to make them pause, think for 2 minutes: how do men cope with heavy blood losses, anaemia, repeated cystitis, flare ups at any time of the day and/or night, diarrhoea, constipation, feeling physically and psychologically drained: please could you tell me how they deal with all this as I am obviously a very weak woman? I have lived all my life with pain, no medical help, support. What more is there to say?

I’m 25 so similar age to you also. It’s definitely an underplayed illness and put down as ‘normal’ to be in so much pain. I pray more research and time is put into this so we don’t have to continually suffer.

Although I don’t wish the suffering on anyone else it is nice to know I’m not alone too xx

HiNow you should consult with endocrinology doctor for pcos and hematology doctor for blood related issues like cloting time, Factor XIII blood test.

Thank you

So sorry to hear you’re still in pain. I recently had some endometriosis removed but not all of it due to some complications in doing so caused by an ovarian cyst. My pain has pretty much gone. What has helped me is a total overhaul of my diet. I have cut out or significantly reduced foods that cause inflammation. This is working for me. Not sure if you have tried the same but wanted to share tips if helpful.

- avoid gluten breads / pasta / cereals. Mainstream supermarkets have alternatives and they taste just as good. I was pleasantly surprised. Sainsbury’s do a ‘free from’ range which is good. They also have ‘genius’ as a brand of bread that is nice. I get the seeded loaf

- reduced all dairy - use Alpro range for milk. There’s mixed messages about soya and endo so I stick to almond milk

- haven’t found a nice alternative to cheese. I occasionally have a sprinkling of this on pasta. I miss my cheese on toast ;)

- reduce fatty foods such as crisps, biscuits, fried foods. This is now occasional for me. Gluten free crisps such as pop chips taste good are are healthier options

- nil or reduced alcohol

- eat lots of green veg, fruit and salads everyday

I allow myself a few indulgences during the first week when my period ends but for the remainder of the month I’m very careful

It’s worth a try if you’re not already doing this. Hope you get some pain relief soon

Take care of yourself

hi hun how's u doing, sorry to hear that ur suffering 🙁 unfortunately I feel ur pain, I've had issues with my periods since 13 and diagnosed with endometriosis since 05, I've had countless operations that u can play dot to dot with my scars 😂 I've also had every combination of hormonal treatments and pain relief medications u can imagine. I believe that the hormonal treatment escalated my endometriosis and cause my pain to increase substantially! I hope you find the help u need and if you need to chat Plz give me a shout xxx

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