I had my first appointment with the consultant today and have come away feeling unsure about what to do next.
The consultant agreed to doing a laparoscopy and has referred me but he said it could take 2-3 months. In the mean time he suggested trying the depo injection, the implant or the mini pill to try and control the pain as the combined pill isn't working.
Although he agreed to investigate as I wanted, I felt like he was rushing the appointment and he said a couple of things I know aren't true - he said because of my age (21) and the fact I've had a clear scan there's a 5-10% chance it's endo, but I know that's rubbish as Endometriosis UK says the opposite. Also he said sometimes periods are painful when nothing is wrong.. Fair enough but not every single day.
I'd really appreciate your opinions on the three treatment options (for pain and IBS symptoms specifically) please only positive stories as I'm already freaked out and confused about making the decision. Also, do you think it's worth changing doctor? He was pleasant enough and did understand when I expressed my fertility concerns but I wasn't completely happy.
Thanks! Xx
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Lcbxo
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Hi huni, sorry to hear your news, I've been to see my gyni today they totally think I have endo, already had the coil in but that's playing up so they are taking it out and want to monitor me for a couple of months, if the bleeding and pain comes back more they said u could have an injection in my hips to stop my ovaries from working m, failing that they said oli could be sterilised and have a lap at the same time, this is going to go for months. They are sending me for another scan to check for cysts 😁😁😁 totally understand where your coming from though I feel Like I'm in pain everyday too xxxxx
I really cant stand drs.. I hate that every women is told the same thing, surgery and pills. Ive been through them both and they are GARBAGE! If they find endp big deal they will cut or burn it BUT it can grow back. You see they don't get to the bottom of WHY you have these symptoms in the first place. You were right periods SHOULDNT be painful. Really that isnt normal. It is in todays day and age but its not normal. Your body is estrogen dominant and its reacting in the form of pain. It could be endo it could be cysts. Research estrogen dominance symptoms online and you will learn what im getting at. Using a good progesterone cream like natpro or fertilica will help your pain and help get rid of whatever issue is in there with out you having to go through surgery! Wobenzym in great to for cysts and endo. I got rid of a 7.6 cm ovarian cyst without surgery! I refused because my dr said id probably loose my ovary in the process. I cut gluten and dairy out of my diet used the two things mentioned above and tried my best to get extra estrogens and endocrine disruptors out of my life. And it worked my cyst is gone I also had a lapo done 8 yrs ago and she said I didnt have endo I recently saw a fertility specialist who looked at my pics from back then and he said I def did and do have endo. Which has come a long way from what it was with my treatment for my cyst but I still had some symptoms leading towards endo. My newest discovery is how red meat effects endo ive been 3 weeks without it and have honeslty seen a difference already! Good luck!
Also your ibs is most likely a dairy or gluten allergy or both. They are very common with women who suffer from endo im allergic to both and my stomach use to be a MESS but now im TOTALLY FINE no diahrea no acid reflux no gas no nothing its like heaven !
Where do you buy progesterone cream or is it on prescription? How is it applied?
I'd love to try it instead of horrible injections etc.
I've had a 'IBS' diagnosis for 7 years but I don't believe it's a real thing, just a group of symptoms pointing to something else.
I've cut out gluten for more than a year and limited dairy but unfortunately I still suffer - I guess it doesn't always work for everyone. I think I've tried every remedy under the sun!
I'm very interested in the cream though if you could let me know some more info? Thanks xxx
Yes of course im glad you asked I would recommend nat pro or fertilica they both are great nat pro is very concentrated but fertilica has added herbs which are very helpful too. Ill post links below on where to buy. Great job cutting out gluten I fear it still may be dairy? I took a while completely getting of dairy but once I fully cut it out I really noticed a difference I would try and see. my hubs and his brother never thought they were allergic to dairy until I told them to really start paying attention to what they ate before their stomach hurt. Hoping you can figure it out I know that is awful also with the creams. You will need more than the reccomended dose since your estrogen symptoms are so high wray white talks all about it shes the one that recomends nat pro because its concentrated. Also never use prescripton progesterone its not the same . any questions feel free to ask. Oh also you start after ovulation so for example I have a 26/27 day cycle. I start my fertilica cream day 15 once I have ovulated and continue until I start my period then stop using it until after you ovulate again
Hi Linda, thank you so much for your detailed reply.
I completely agree with you and I know it's so important to be seen at a specialist centre, it's just through desperation and suffering that I accepted a referral to be seen quickly.
I was seen at a BMI private hospital but of course that doesn't mean anything if the surgeon doesn't even believe there's a problem. I live in Enfield, North London and my local hospital has a specialist centre - I asked my GP to be referred there but the wait was months long just for a first appointment.
I can't work because of my symptoms and have been increasingly depressed, I've been signed off for two months now and the thought of going back makes me feel sick. I don't want to put more chemicals in my body when the problem isn't being treated, I just feel out of options and so uncomfortable in the short term.
I guess my question is, if this private doctor has referred me for a lap, how do I go about changing it to be done at the specialist centre? I don't want to start all over again if I can help it as I can't survive on SSP much longer. Do I ring the GP or private hospital?
Also I'm guessing the 'treatment' options he suggested are rubbish?
I've just checked and the specialists on the list also work at the private hospital I was seen at yesterday, I guess that's a good thing in terms of swapping over?
I know you're busy now but if you could please let me know who I contact to swap I'd be really grateful. I'm considering paying to see them as you suggested.
Nat pro- great product not greasy good quality and concentrated the only reason I switched to fertilica was the fertility herbs sounded intriguing but I do like both and once I get pregnant I cant use the herbs so I will go back to this organicproducts-llc.com/cgi...
A video On how much to use I use two pumps twice a day of the fertilica and twice the dose for nat pro twice daily when I use it natpro-progesterone-cream.c...
naturalfertilityshop.com/se... LOVE this website so many amazing things on here. For my cyst and endo ive taken the progesterone cream WOBENZYM which is incredible and womens best friend
Thank you - great to have some more info. I'll have a look at all those links and give it a try
I've been prescribed the progesterone only pill by my GP also so I'll be trying that instead of the combined pill.
Xxx
for endometriosis...see only a true excision specialist...this is your only shot at getting your life back! If a Dr. wants to put you on medications without cutting out the diseases it's nothing but a band-aid and will only put off the inevitable but the damage inside is still happening so it's critical we women start insisting on better care which is excision of endometriosis...if they can't remove it from the bladder, bowels, ureters, diaphragm they are not qualified to treat your disease so move on and find someone who is...good luck it's a tough disease and hard to push for yourself when you don't feel well but we have to in order to have a good outcome!
All the comments on here really helped me make a decision, I went back to my GP and requested a second opinion - I gave her the names of two endo specialists so fingers crossed I get the referral letter through soon. It means suffering with a longer wait but at least I know I'll be treated properly! The consultant I saw sent a letter back to my GP saying 'because of her age and clear scan it's unlikely' what a load of crap!
Hi. I wonder if this thread is still going? I am 27 and had a lap last month. I was diagnosed with IBS 7 years ago and have suffered constant fatigue since around the same time. I was on the pill until last year and since coming off, my IBS has become much worse, particularly on ovulation & on my period, I suffer ovulation pain, rectal bleeding the dat before I start my period, period pain for a week before my period (and when on), lower back and hip pain during my period, and am absolutely exhausted both on ovulation & from the week before I start my period until after when the hip/back pain has subsided. Endo was found on my left ovarian fossa -"near my ureter" and conflicting between whether it is on / near because she said she couldn't see my ureter due to adhesions but wasn't able to remove it in case of damage. I am being sent between GP & consultant and at a loss because she says it cant cause my fatigue, but may cause the rectal bleeding but not the IBS?! Have an appointment tomorrow to discuss hormonal options but the reason I came off the pill last year was because Cilest gave me crazy PMS which almost caused my fiancé to leave me (I have also been on Microgynon & Marvelon which was before meeting him and just sent me batshit crazy in general). The consultant said she wouldnt refer me to a specialist because she didn't see it on my bowel but I just dont understand why i feel the way I do as she keeps saying it is only "minimal". How did your treatment go in the end? Any advice on what I can do next would be much appreciated. Thanks x
Hello Hannah. That’s so strange, I don’t use this forum anymore but got a notification through email! Poor you. I’m so sorry to hear you’re suffering. Reading my own words after all this time is really weird - I really was suffering and it was an awful time in my life. I had my lap and they didn’t find anything, the surgeon said my organs are all ‘perfectly normal’ in fact. Looking back on it now, I believe my issues came from severe anxiety and funnily enough, the pill. I had a bad couple of years between 2015 - 2017 after I left uni, trying to work and deal with crippling symptoms. I gave up on medical intervention and tried to work on a more holistic approach. I did take antidepressants for a couple of years on and off and had counselling. 3 years on from this post, I came off the pill last year after 7 years on it and have seen a marked improvement in how I feel. Turns out putting synthetic hormones in my body all those years was harmful, despite what doctors tell you. The progesterone only pill, cerazette, gave me the worst panic attack I’ve ever experienced - don’t ever take it. I still suffer from mild anxiety but I’m able to live a pretty happy and normal life, made easier by a home-working job. Not being on the pill means I feel my periods quite intensely like you, including ovulation. I guess your situation is different because they actually have found endo, but I do wonder if your issues could be being made worse by anxiety. Do you suffer from anxiety at all? If you’d like to talk more, I’d be happy to xx
Thank you so much for your response and so quick too! I am glad you are feeling more yourself now. Like you, that was the reason I came off Cilest because I thought it was causing my symptoms - severe PMS, acne, IBS maybe - mainly because my stomach issues started not long after I began taking Cilest. After a normal colonoscopy and trial and error on diets nothing seemed to work and the PMS became severe so I thought it must be the pill and that coming off it I'd be "normal" lol. But that's when my symptoms worsened I don't suffer anxiety - maybe in my early 20s I was very insecure but I am definitely not like that any more, any anxiety episodes I have had in the past were definitely caused by the pill (Microgynon, Marvelon in particular and Cilest only before my period). I have an appointment with the consultant again today to discuss treatment options but she said the endo wont be causing IBS or fatigue but on endo uk's website those are two of the symptoms so I am very confused, and nervous about starting on hormones again. I had the copper coil placed last year because it was non hormonal and I thought I would resolve my issues - seems funny now ha! The options I have been given are the Mirena coil, Depo provera injecton, Progesterone only pill, Implanon, Combined pill, Prostap gnhr analogue. I get married in 6 months so I don't want to go through weight gain/crazy episodes in the run up to my wedding!! Feel between a rock and a hard place lol
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