At such a loss on what to do: Hi Everyone... - Endometriosis UK

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At such a loss on what to do

Coffeebeann profile image

Hi Everyone, I hope you're all keeping well!

I just feel like I need to rant this out if I'm quite honest. I went for a Laparoscopy in 2019 and they found my abdominal wall stuck to my bowel through adhesions, the surgeon had no idea where it came from and asked if I had been in a major car crash or had major surgery in that area which I obviously had not (he would have clearly seen some scars on my stomach if he did) and it was never diagnosed as Endo and i was told I was OK and sent home and that was that. I have recently been told by an actual Gynaecologist that it was probably a general surgeon who has done this and didn't actually know what he was looking at and she says all my symptoms point to endo (the fatigue, painful sex, pain when going to the toilet, pain in my pelvis, the terrible bloating, unknown heavy bleeding which isn't a period) some of which got better when I was put on the depo injection and obviously when they cut those adhesions away. But I'm still living in pain everyday and I'm only 23 but yet I feel I live the life of an old person. I went in for another lap only yesterday and the consultant was so dismissive. He said he found no endo on my uterus (which isnt a surprise to me, as its actually suspected to be around my bowel) and when I asked him if he checked my bowel he said he didn't and say that all my symptoms where 'probably just ibs' and he laughed and walked away. I ve been tested recently for IBS and Crohns and all that has came back negative and now I feel utterly heartbroken and I feel I'm back to square one. I thought I was finally going to be diagnosed and would be set on for a plan to help live a more normal life.

Sorry for such the long rant, I just feel so alone and confused. If anyone has any advice or has been through something similar I would to hear 💖

24 Replies

I feel so angry for u, how dare he laugh!! What makes these people so inhuman. You really need to go to a BSGE centre with endo symptoms not just a general gynae. I would def complain about this awful treatment you have been given. I am at a loss for words, what a total waste of time. 😡Hope you recover quickly from the lap, take it very easy xxx

Coffeebeann profile image
Coffeebeann in reply to EndoJaz

I know, and I was still under anaesthetic that I think all I did was mumble a lot of rubbish as he was lied away. I feel a little silly asking but what is a BSGE centre? Thank you so much 💖💖

EndoJaz profile image
EndoJaz in reply to Coffeebeann

It’s a specialist centre for endo xx

Coffeebeann profile image
Coffeebeann in reply to EndoJaz

Thank you so much! I ll definitely need to have a lot to see if there is any near me 💖

Hello Coffeebeann, I am very sorry to hear that you have had such a terrible experience, I really thought that things had moved on! All I can say is, please keep pushing your GP to get you seen by the right person, follow your instincts. It will get sorted eventually. Hope you feel a bit better soon to get your fighting spirit back.

Hi Ferrari, thank you so much! Me too to be honest, it’s sad to think women’s need are still dismissed. Thank you so much for your kind words 💖💖

Hey, I'm so sorry to here what you going through, I'm in the same situation as you I've got all the same symptoms and just keep getting dismissed by everyone and it's heartbreaking. I've been tested for everything under the sun, thought it was my bladder then my kidneys and now they think it's endometriosis but all they have suggested to help is the pill so I'm on that now and I'm so much worse still got all the same symptoms but now I have constant brown discharge which is awful. I've rung my GP and I get told it's normal but I can't live like this it's horrific. I'm only 23 and I feel like my whole life is over. I hope you find someone who can help you soon xx

Hi, I'm so sorry to hear this! I can tell you for past experience that the pill does not help!!! What I found to have greatly reduced my symptoms is the depo contraceptive injection and I would highly recommend that you ask for that instead. I spoke to the head gynaecologist in Dundee and she said that the depo was the best way to stop my period. Please don't give up no matter how disheartening it is. I've been living with this since I was 14 and I'm now 23 as well. I know it's difficult but don't give up you know your own body! If you need someone to talk to about it don't be frightened to private message me! If I can support in anyway I will. Its a horrible thing to go through and we all need to stick together 💖💖💖

Aww thank you, I will look into that. Yeah the pill definitely isn't helping at all. Been 18 months and I've got no where so I will try anything xx

Yes please do! If it also helps I found that moving onto a plant based diet has also helped reduce the pain. None of it has taken the pain away completely but I have found it has reduced it a lot. If you have any questions please feel free to ask! If I can help I definitely will xxx

Hi. I can't believe he laughed at you. That's horrible. I've read the other comments and the BSGE centre sounds a very good idea. At the very least I'd go back to your GP and ask to be referred elsewhere. The hospital you've been to obviously have no specialism in this area. There are those who care though, so I hope you find them very soon. In the meantime, do you have a tens machine at all? I find a tens won't take away the pain, but it can genuinely help sometimes. Sending much love and hugs your way xx

Hi,

Yeah, after I came out of surgery he told me didn’t find anything and said ‘it’s definitely not a gynaecology problems it’s probably just IBS ‘ laughed and walked away. I honestly think my heart dropped. I ve been tested for IBS and it’s not that! I the gynaecologist that I was before my surgery said it was most definitely endo, but because I had had surgery to remove it the first time in Perth she was not willing to diagnose until she had seen it for herself. I have had photos taken from my first laparoscopy so I’m thinking of getting her to request them and to have a look and them to see what she thinks! I was devastated when he said that so casually. I don’t own one unfortunately but I will definitely look into it! Thank you so much for mentioning it!

Thank you, I really appreciate the help. Sending love and hugs back 💖💖💕 xxx

Hi sorry your having such a hard time you need to demand to see a Endometriosis specialist it’s so important to see someone that actually knows about this disease I hate that a doctor actually laughed at you and what you are going through I’ve had similar and it makes you feel awful.

The fact that you have been messed about and put through laps when they weren’t done throughly is just not on unfortunately we have to push for anything now a days especially with Endo you know your body and you have to trust yourself / gut and push.

Sending lots of love your way xx

Hi,

Thank you so much. I know it’s terrible how women rare treated and are left in so much pain for so many years. I told him to look at my bowel because during my first lap (which wasn’t done by a gynaecologist) they found my abdominal wall and bowel stuck together and since then they believe that the endo is affecting my bowel but he didn’t look there! Just said my reproductive organs were fine and I’m ok. It was so frustrating.

It’s awful when they laugh at you it makes you feel so small and belittled, like your pain is nothing serious and they don’t know why you’re even there tbh.

Thank you so much,

Sending much love back ❤️ Xxxx

I am so sorry to hear of your experience to date. While I appreciate a general surgeon may not have recognised endometriosis growths for what they are, they certainly should have had it looked into, not just assumed it was all okay.

In respect of your gynaecologist being dismissive and laughing at you, this is 💯 unacceptable and I would encourage you to do the following:

- Request a copy of your medical records from your gynaecologist's office first.

- Once you have your records safely in hands (to ensure they can't 'update' anything afterward, file a formal complaint via PALS. Ensure that you note dates and any other possible issues you may have had, regardless how minor, as it can add up.

- Ask your GP to refer you to a completely different gynaecology team for a second opinion. If in the UK you are entitled to a second opinion. I would suggest you do some research online into what endometriosis specialists are within a distance you feel you can commute for treatment, and research feedback, specialism, and practices. Surprisingly being a consultant at a BSGE centre (and listed as the Endo specialist) doesn't exclude consultants who are still following out dated practices. I learned this only after it was too late for me to take into consideration, and it is definitely an important fact. Nancy's Nook Endometriosis Centre on FB is a treasure trove of information and they also have a list with information on consultants who specialise in endometriosis and have even confirmed they offer excision rather than ablation. This covered consultants in different parts of the world, but is broken down by country.

- I would also strongly recommend considering asking to record your conversations and appointments going forward when it comes to your personal medical appointments, for your records. It will offer you the ability to check back and confirm any advice, plans, or discussions if ever you need to.

- Try to remember that you know your body and how it feels. You know your symptoms first hand and you know what you are going through. Beware of gaslighting, excuses that don't make sense to you, vague answers or lack of proper treatment plans. You deserve better.

I am sick to death of how many individuals continue to suffer and not receive the respect and care they deserve, and by consultants with proper up to date training, including hands on experience. They should be utilising every up to date test and investigative procedure available to them until a concrete diagnosis is made and a successful treatment plan has been implemented.

Please try to remember you are worth the fight. I wish you luck and success in receiving the treatment you deserve.

Coffeebeann profile image
Coffeebeann in reply to Missy100

Hi,

Thank you so much! It is definitely heartbreaking. And it takes so much out of you, knowing your ve been fighting for years to be diagnosed. I did speak to the consultant before hand and explain that the scarring that was found the last time was at my bowel and that I have been thankfully told that my reproductive organs are fine. However he seems to have just dismissed what I said and went on to look only at my reproductive organs and said they were fine so there was no endo and that I’m not a gynae problem any more. It makes you so frustrated and want to scream.

Thank you so much for that I will definitely look them up on Fb!

I will most definitely request my medical notes as I would love to see what was written. When I was waiting for surgery the second time the surgeon told me if I had a partner I was not to prolong having children much longer and never offered an explanation as to why which is obviously worrying.

Again, thank you so much for all your help and advice I have taken it on board and I’m hoping it can get me somewhere 💖

I hope your keeping well 💖 xxx

ber_dock profile image
ber_dock in reply to Missy100

Fantastic advice Missy 🙏 ❤️

Oh gosh,Sending you tons of healing vibes your way!I feel your pain as I had a dismissive first lap and he missed the Endo entirely and diagnosed a tubal abscess.He blamed my pain on ibs too but the disease ended up ravaging my body & the second lap showed it was everywhere.

To this day I wish I had played my face up but I was only a young teenager then.Maybe when you’re stronger you might want to take this further.

He told me that I was making him miss golf and that our appt must be hurried.It took me years to get further help due to what he put on the notes.

Gobsmacked for you especially him laughing at you!It really disgusts me when women get treated this way in the gynaecological field.

And you’ve just had an operation so you’re at your most vulnerable 🙏

Always know lovely that we are always here for you!

You must be feeling so perplexed by it all..I wish you a speedy recovery from your lap

If you need to chat I’m always here to chat,just throw us a pm

Rest well,Sending you tons of healing vibes your way

❤️✨❤️

Coffeebeann profile image
Coffeebeann in reply to ber_dock

Hi, I’m so sorry to hear this. That is absolutely awful and I don’t understand how they did not see it right away. I feel like they rush and treat us like an inconvenient piece of meat tbh.

Yes! And the best part is it is in my notes that I have been tested for things like IBS and Crohns. All of which came back negative. I just feel like I’m back at square one and have no idea what to do or who to go through for help.

Thank you so much! I definitely will. It does help to have someone else who knows what you’re doing through to talk to 💖

ber_dock profile image
ber_dock in reply to Coffeebeann

That’s good for you that you do have your previous medical papers mentioning the ibs and Crohns.I would definitely request your laparoscopy papers too 👍🏻 I really do feel for you..its such a deflating feeling.

First thing I would do tho is get your papers for this operation and in the mean time concentrate on healing from the laparoscopy.

You don’t need this stress

Its time to recover and concentrate solely on getting strong.

Once the notes come through then you can get your thoughts together and look at what avenues you could possibly take

You can request a second opinion tho..which is definitely worth it in my opinion/experience👌

I know it doesn’t help you in the short term tho..Rest well,& lots of self care

X❤️🥰

Coffeebeann profile image
Coffeebeann in reply to ber_dock

Hi,

Thank you so much for all your help and advice it’s really appreciated!

I definitely will, I just need to feel like there is an end in sight somewhere!

Thank you, you take care as well and again I cant thank you enough for your kind words they mean a lot,

Sending love 💖☺️ X

ber_dock profile image
ber_dock in reply to Coffeebeann

We’re always here for you Coffeebeann Massive love right back at you..Good luck with everything 🤗❤️🤗❤️

Hi, this sounds exactly like me! I had my laparoscopy and hysteroscopy operation on Thursday- 22nd July and was told prior to the operation that I had fusing of my bowel and that it had attached to another area but they were unsure till they investigated. As I had my appendix removed in 2009 as an emergency operation as that has fused inside and I was shown pictures of this on Thursday before my operation for the first time and it actually shocked me how bad the scar tissue/fusing was! I asked before having my surgery could this be endo as I have all the similar symptoms to yourself every month and the consultant was unsure. After my operation I saw a doctor and consultant who both told me no endo was found so you are fine and to maybe contact your GP to be referred to a dietician because you may have IBS! I asked about the scar tissue and they said they were unable to remove due to it being too thick and it is better to be left! So now I feel like a fraud and still doesn’t explain all the pain I get every month! So I can completely emphasise with you and how awful for them to laugh and make you feel like that. Take care ❤️

Coffeebeann profile image
Coffeebeann in reply to Star30

Hi,

I’m so sorry to hear this, that’s so awful! You ve been through so much and still have no real answers. And it’s so frustrating when they try and fob it off as something much easier to deal with (on their side). When my abdominal wall and bowel were attached through scarred tissue the consultant could not give me an answer as to why it was there or how it had happened. He asked if I had been in a major car crash or had had major surgery in that area, all of which I hadn’t. He then proceeded to tell me he took photos of the area and when i asked to see them I was refused, but I was still full on anaesthetic that I didn’t really fight him on it and now no other doctor or specialist can find these photos.

Please don’t feel like that, you know your own body and you know when something is not right. You just have to keep trusting yourself and fighting to get seen by the right people. Have you spoken to a gynaecologist? If not I would have them look at the photos and explain all your symptoms to them and see what they say about it.

First and foremost, please rest and build back up your strength 💖 I wish you a speedy recovery and sending love 💖💕 xx

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