Finally a full diagnosis!

[Hannah0091]

LONG PPST ALLERT

I finally have a full diagnosis of Endometriosis, PCOS and adhesions. It had taken me best part of 5 years to get a full proper diagnosis. I have been off work for 9 consecutive weeks lately due to pain and low mobility. My symptoms ranged from night sweats (drenched when waking up) to not having a period for 6 months to debilitating “IBS” I saw 6 doctors & 2 specialists over the years with 18 consecutive GP appointments crying & begging for them to do something. They mostly asked me about my depleted mental health rather than what was actually causing my depleted mental health.

Without me knowing everything from fashion choices to habits revolved around this chronic illness I never knew I had. But finally now I have a diagnosis.... I feel free, I feel in control of my body once again and I finally fully trust myself again.

I’m £3K in dept (& I don’t say this lightly as currently I’m off work, getting married in Aug and have a mortgage 😅) I chose to go private as I had a really traumatic emergency open surgery done abroad a few years ago that has possibly mentally scared me for life. After everything I went through with that I thought I owed it to myself to try and have health care quicker and all on my terms.

I suppose my point is, anyone who thinks something is not right or is struggling with periods push the doctors and trust yourself! There were times when I literally thought oh no I can not open this can of worms again and avoided as much as I could I took all the painkillers I could handle, bounded my tummy with material (cuz it helped with the pain) and carried on. This was not helpful and didn’t serve me in the long run.

For me Endometriosis & PCOS is crippling but I am proud of myself for pushing and not giving up. We are all a lot stronger than we realise 💪🙏

[Paulamar02]

Really happy for you for finally getting to the bottom of your ongoing issues!!! You should be proud. X

[Rubicon83]

Hello, can I ask why it took so long and so many doctors to get diagnosed? I’ve been fighting for a laparoscopy for 18months, had two cancelled, finally got in on Friday and they tell me they found nothing wrong 😔I don’t know where to turn next.... starting to feel like I’m going mad as I know something is wrong I have to have so much time off work I think I’m very close to loosing my job but some days I just can’t walk or move around it’s so painful. I often have this horrible pressure on my bladder, and when I need to go I gotta go now! I get up 2/3 during the night. I constantly swing from constipation to violent diarrhoea. Have lower back pain and pain in my groin that travels down my right leg. And I just feel exhausted all the time . Any advice on how to move forward would be great.

[Hannah0091 in reply to Rubicon83]

Hi,

Firstly by reading I can see that your having such a rubbish time 😣 & I feel for you, Your not alone.

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It took me so long because it’s Endo and other Gyne problems are a underfunded area health (unfortunately) so of course it’s misunderstood. Most GPs/doctors don’t understand it. Even some specialists miss understand certain aspects of the condition. So sadly even with a diagnosis it’s tricky to find a sustainable ‘treatment’ (I say ‘treatment’ because there isn’t really one) for me I find it’s more about managing the condition through a combination of things.The UK average of getting a diagnosis is 7 years which is disgraceful but real. For some women it’s more and for others it’s a lot less.

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I have spoken to a few women who have had a laparoscopy and the have ‘found nothing’ however it doesn’t mean it’s not there or you don’t have Endo or your symptoms are gone or not valid. They Absolutly are!

I have noticed our health service culture is very much ‘well we can not find anything so you must be okay’ which of course is not the case at all and unfortunately makes us question ourselves and symptoms.

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If you wanted my advise of where to turn next honestly I would collect your medical records from your GP (you have the right to request them) and book an consultation appointment with a private gyne (ideally who specialises in Endo) of course this will cost about £130-£210 but it’s a second opinion. (Which I really understand when not working is a hard choice to make)

If you chose to go, I would recommend to go with all symptoms/ health aspects medication and pain diary written. This helps me stay on track with getting my point across.

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If you find it might be difficult to do this you could always request another referral from your GP or see a different GP to look at giving you another referral. It’s really hard but we have to push to get herd. Sadly but don’t give up the fight. Listen to your symptoms and body and don’t let poor investigations make you question your symptoms.

Please feel free to ask further questions if u need to. I really hope this helps.

Endometrosisuk might help they have a free telephone service where you can speak to people on the phone for support.

Xx

[Rubicon83 in reply to Hannah0091]

Thankyou so much for taking the time to reply ☺️I have booked an appointment with my gp to see if I can get referred to a specialist but I am also looking into a private consultation as I’ve just had enough! I did hear back from the hospital yesterday as since I was discharged I have been trying to contact my surgeon to discuss what’s happening next and to talk through the laparoscopy as he left before I woke up. Discharge notes said everything was fine, no further action! But he also noted that there is a cyst on my ovary. But that it is normal...I am confused why he did not remove this and why he thinks that it isn’t that that is causing my problems. I was told that I can not speak to the surgeon without an appointment! 🙈

[Hannah0091 in reply to Rubicon83]

Your Absolutely welcome! I’m sure you are as it’s a very draining tedious and emotional thing to go through. 😢 ahhh I understand, what an ordeal. Fingers crossed that your next appointment will give a little more light. Also I would recommend (if you are well enough to read) the book called. Beating Endo (a patient’s treatment plan for Endometriosis) by DR Iris Orbuch & DR Amy Stein. (I haven’t read all of it only just started but the first chapter and quite hooked) it’s very validating to our pain and other symptoms and explains things a little bit more in a scientific perspective that’s still easy to understand. It’s on Amazon for about £12-£14 Let me know how your appointment goes good luck xx