Endometriosis UK

Average waiting time to see an endometriosis specialist ( Poole General Hospital )

Hi ladies happy Easter! 🐣

I got referred by fertility specialist; after my second laparoscopy which again endometriosis was left on my rectum. 🙈

I received all the copies of letters; one to my GP, and one to the endometriosis specialist.

I have decided it might be better to wait to see this specialist till I try again; my endometriosis is “ fairly superficial “ but is “ all over my rectum “ and “ has very symptomatic endometriosis “ according to my fertility specialist. 😳

For those who don’t know I also suffered an early miscarriage last July (after my first laparoscopy treated endometriosis) and i do wonder if the left endometriosis played a part to play in my loss. Some would say that was paranoia but so far my gut instincts have been proven to be right. The symptoms I have can’t be healthy for a pregnancy.

Really hope someone can tell me it’s not that long 😂 but seriously I do feel lucky to have been referred to an endometriosis specialist because I know it is very difficult to get a referral 😊 x

An update; I contacted the hospitals booking department over waiting times; there are appointments available this month/ lots in May! Apparently because it is quite specialist and not many are referred it has a much shorter waiting time 😀 I wanted to put this up to help others know it’s not always hideous waiting times 😀 x

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Yes it is hard to see a specialist- I asked to be referred and they have referred me to a Gyno - I’m not happy going to ask to see another doctor xx

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If I wasn’t for my fertility specialist I wouldn’t never been referred to one; my GP seems to naively thinks all gynaecologists are experts in endometriosis 😂 It’s frustrating the lack of knowledge 🤦🏼‍♀️I’ve had two laparoscopys within 8 months and still suffering with severe symptoms and pain. 🤦🏼‍♀️

Where is your endometriosis based? If it’s not just pelvic organs or severe you need an endometriosis specialist.I hope you get the support you need. It’s awful we have to fight so hard like suffering with endometriosis isn’t difficult enough 🤦🏼‍♀️there should be guidelines that you can print off and show your GP. Good luck xoxo

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I’ll check out the guidelines thanks. My pain is in my right ovary and in my tummy towards the back - wherever that is. It’s horrible. I never had the pain before my lap and I’ve been so upset about it. It’s affecting my fertility (obvs) and my enjoyment of life. I’m so tired of feeling this way. If I could feel normal again that would be something xx

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Oh sweetie it’s awful battling this condition as well as fighting infertility know that one 🤦🏼‍♀️ are you under a fertility specialist? If you aren’t get referred. If you are can you not get your fertility specialist to refer you to an endometriosis specialist? I have found my fertility specialist to be much more understanding of this condition and it was him who did all my referrals 😊

I found my endometriosis returned quickly and produced worse pain and symptoms after my first lap.; it showed on my second laparoscopy that it had re grown back and more of it this time. My endometriosis is aggressive 🤦🏼‍♀️ when you talk about feeling normal again I want that too 🤦🏼‍♀️ hopefully we will both get this sorted out soon xoxo

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Absolutely, my fertility doctor just pushes me towards ivf. I don’t know if that’s best for me tbh. It’s expensive and emotionally draining in the event it doesn’t work out. I’d like to remove the problem - or work out where it actually is and treat it somewhat. They did so much work in August repositioning my uterus, excision, diathermy you name it. I recovered amazingly quick and for one month had no problems. Acupuncture helped but I skipped this month and it’s back with a vengeance. I can’t keep having acupuncture just to feel ok - it’s not fair. I hope we will both get our wonderful news and then conquer this awful condition - to a degree of where we can live like normal people again xx

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Is it worth getting a second opinion?

There is no way we could ever afford IVF ; I’m just hoping the specialist can “ fix” me. If your endometriosis is severe or in certain places such back of the uterus that could hinder it being successful.

The problem with endometriosis is it can does grow back., especially if you’re prone to it more or some has been left.🤦🏼‍♀️Did they remove it all? Both occasions they left endometriosis on my bowel; it is now covered with endometriosis implants mine returned with a vengeance; it’s like the first laparoscopy angered the beast 🤦🏼‍♀️being in pain and suffering severe symptoms gets you down and can’t be good for any pregnancy; that’s my opinion obviously I’m not medical..I’d definitely push to get this sorted; your health is important 💝 xoxo

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Apparently they removed it all, I had extensive endo in the pouch of Douglas and it was on my right ovary. I think I need a second opinion, I don’t want any ivf until I know that my uterus is ok. Had an ultrasound last month (paid for privately) and there was minimal fluid in there (cd19). It could have been ov but it could have been endo. I think this is where I’m getting the pain xx

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My endometriosis was in the pod too. I don’t think endometriosis really shows on a ultrasound; mine never has. A lot of medics told me my endometriosis couldn’t return so quickly; but I knew my body and knew endometriosis pain enough to know it was back and I was right, always back your gut instincts 😉Luckily I had a supportive fertility specialist who took my concerns seriously ( that’s the edited version 🙈) I don’t blame you I wouldn’t either ; if your symptoms and pain are back this shouldn’t be ignored by the medics.; pain is not normal and needs investigation.Any gynaecologist worth their sort will know that endometriosis often does re grow.🤔 If you truly get no where with the NHS could you see an endometriosis specialist privately who also works for the NHS as well for an opinion on your pain and symptoms? Most work privately and for NHS.Then if they felt a laparoscopy was needed you could ask to go on their NHS list? Lots of ladies here have gone down that route.I have been told by other ladies here if endometriosis is in the pod makes it severe ;regardless of the amount of endometriosis and requires an endometriosis specialist. Definitely seek an opinion before embracing IVF otherwise you’ll always wonder if it might have worked ( not saying it wouldn’t but if it did would be awful)xoxo

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Thank you for your advice. I’d never really experienced that much pain tbh then after the lap they said it was stage three endo I was completely shocked. I didn’t think I was that bad. I’ll go back to the drawing board xx

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My pain and symptoms are even worse after my first laparoscopy ( they were bad before) because my endometriosis had grown back much more. Mine was mild originally; but as it recurred so soon and is all over my rectum it needs an endometriosis specialist.Some women are more prone to recurring endometriosis; I am one🤦🏼‍♀️definitely don’t put up with the pain and symptoms you deserve it to be properly looked intoxixo good luck 😘

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Hi Ajeff, I have similar situation like you . I have pain just in period and my gp suggest to do lap for diagnostify and to teat bacause in ultrasound it shows endometrioma in right ovary. I dont want lap as soon as I start trying conceive because I worry maybe after lap I will be in constan pain.

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Unfortunately it get only be diagnosed via laparoscopy. It’s a shame there isn’t a less invasive way to diagnose.I did conceive after my first one ( after 6 years of not being able to) but did lose the baby. My endo is located in pod and rectum. I understand the concerns as mine has returned even more ; I had my second laparoscopy last month and now I’ve been referred to a endometriosis specialist for probably another laparoscopy it’s on my bowels so gynaecologists can’t treat it 🙈 I’m also trying to conceive too. It’s not easy is it? xoxo

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Well I know I have endo in pod even thought is not showing in ultrasound. And maybe in bladder because when I am in period I have pain during urination and in rectum area. My endometrioma is 38 mm (before three months was 41mm ) and my gp said its so small for lap. And now I am in progesteron therapy and it seems to be better ... who knows xx

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I didn’t know endo could be too mild too treat. If the fertility specialist is happy and you’re not suffering unpleasant symptoms and pain then that’s the main thing xoxo my endo was the cause of our infertility but has gotten worse after surgery but maybe I’m just unlucky and as my fertility specialist says “ more prone to recurring endometriosis “ xoxo

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Im too young for conceive ( 22 y.) I have read that endo is an inflamatory disease and your body must be to too quiet to be pregnant and thats why need time to heal

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Sorry hun I thought you were ttc too. That makes sense to wait till you are ready to want a family; you don’t want to risk it recurring more and having many surgeries and all the risks that involves. Glad you have found a treatment that is easing your symptoms 😀xoxo

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I will be waiting for you to hear a positive story xx

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Aww thank you. If I do have success I will post to give others hope 💝 xoxo

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hi. How you feeling today? For the one with saw in Cheshire he had a 9 months waiting list and a further 12 months for surgery. My husband has cover with work and I saw him privately. He couldn't operate on me in the private sector but put me on his NHS list and due to a the situation becoming life threatening I was operated on within 2 months. Xx

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I’m better thank you. The infection has gone 😊

Poor you 9 months is hideous to wait when in so much pain 😳 hope mine isn’t so long. I can’t afford to go private and my health insurance at work wouldn’t cover pre existing conditions. How awful you had to be that bad before they prioritised your surgery 🤦🏼‍♀️ how are you since the surgery if that isn’t too personal to ask? Did your symptoms improve? I’m just curious to see if my condition would improve; I had 2 laps but no improvement as endo both tines is left on my rectum and now is spread all over it 🤦🏼‍♀️xoxo

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hi. How you feeling today? Luckily I didn't wait that long I saw him privately the end of January and had the op end of may. I'm surprisingly comfortable, its still on my bowel / bladder and they have decided it's not possible to operate again until it becomes that bad I'm prepared for real possibility of bag for the moment as long as I'm super careful with what I eat I'm feeling well, its my husbands turn to be unwell now so the ivf is on hold for the time being.

have you seen the pain time about management till you get the appointment through? Xx

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That was good glad the pain and symptoms are much better 😊sorry to hear hubby is unwell hope he feels better soon and you can crack on with ivf 😊

I contacted the hospital and asked about waiting times; the endometriosis specialist has appointments this month and next month ; so I won’t be waiting very long 😊 apparently as it isn’t common to be referred to an endometriosis specialist so waiting list is very short 🙌🏻 happy days 😀I’ve got meds for pain; it’s the bowel symptoms which are the worst very unpleasant 😔 my GP thinks there is a tear in there 😒 at the moment I’m watching my diet but I still get some symptoms but a little better. Hopefully I’ll see him soon and get it sorted out 😊xoxo

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Ladies I have updated! xoxo

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Hi Jess! A little off topic, but I noticed you're under Poole Hospital for your treatment. I'm actually thinking of setting up an Endo support group for those in the Bournemouth/Poole/Dorset area - I'd love to know if you'd find this kind of thing useful :)

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