I am soon to be 20 and have recently been told I very likely have endometriosis. On one hand it was amazing to know that something can be done about this but on the other hand comes all of the questions along with a potential diagnosis. I am to start on the contraceptive implant that will hopefully help with the symptoms. I am also taking the strongest over the counter pain/inflamation medication but it has stopped working. Now I have only had an ultrasound so far and it shows that my left ovary is stuck to the back of my uterus I've been told I will have surgery in 3-6 months ( I have an irrational fear of anaesthesia because one of my close relatives is resistant to it i.e.. wakes up in surgery). I'm here to hopefully hear other peoples points of view of people who's endo effects them in a similar way to me or is in a similar age range all advice is welcome.
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ouchthishurts
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I don't think you should be getting the contrceptive implant unless it's the coil. Endo is fed and grows with oestrogen and the normal contraceptive implant contains oestrogen. This makes me wonder if your doctor is any good and why they have recommended this. Surgery is a good idea for your stuck ovary but it's really important that you get a very good doctor. The progesterone only pill or the coil will help stop your periods withoy giving you more oestrogen.
The surgery itself isn't scary because it's just like you have gone to sleep and then when you wake up it is done. You do feel very sick sometimes when you come round and you will probably have a terrible pain in your shoulder for three or four days (it's to do with the anaesthetic). After that it's just a case of taking it easy for 4 or 5 weeks.
Maybe you could ask to speak to the anaesthetist well before the operation and explain that you have a relative who wakes up during ops. Perhaps there is something they can do to pre test this, or to help you feel less anxious. I was really scared at my first op that I wouldn't come round which was much more illogical but now after several ops I realise that my problem is actually terrible vomiting for hours when I come round. For the last op I spoke to the anesthetist before the op and he changed the mixture of drugs and I only vomited once.I think the anaesthetist would probably appreciate knowing that there is an issue in your family with this and he/she might be able to do something different. But on the NHS it might be tricky to do this. Try asking your surgeon who the anaesthetist is and if you can contact him.Talk to your surgeon about all your worries and tell him you are scared. Part of his/her job is to make you feel safe and confident.
Good luck drop me a line if you need any advice. XX
Hello,Thanks for all the advice I will definitely ask to speak to the anesthesiologist before hand and maybe take the relative with me as they have a better understanding than I. I have double checked my implant isn't oestrogen bassed at all.
Ignore what you have been told above about not having the implant - it is progesterone only. But in any event the combined contraceptive pill (oestrogen and progesterone) is also given to those with endo. There is no evidence that the oestrogen in the pill feeds endo - it mimics a state of pregnancy with balanced oestrogen and progesterone at much lower levels than normal to prevent ovulation.
When the left ovary is stuck behind the uterus it can be a sign of what is called rectovaginal endo which must only be treated in a specialist endo centre. The sonographer who did the ultrasound will only have had the training to look at the uterus and ovaries and not the advanced skill to look for deep endo. The symptoms usually include lower back pain which often radiates down the left leg, pain with sex if appropriate, bowel problems and often sharp stabbing pains alongside the normal general pelvic pain. This can be at any time and not just with period. Unfortunately sometimes pain meds or hormone treatments will only be partially effective but stopping periods should help.
Did the gynaecologist do a thorough internal exam to feel for any deep nodules? I assume that you were seen in general gynaecology (normal hospital) and when they operate there they will only be able to diagnose if you do have deep endo. You would then have to be referred on to an endo centre. I don't know if you or anyone in your family would have the funds for a private advanced ultrasound (around £300) to check if you do have deep endo as this would get you straight to an endo centre rather than having an unnecessary diagnostic lap. Will message with more info.
Hello Wow the explanation of the leg pain was definitely spot on. I am seeing just a general gyno at the moment I will definitely look into the advanced scan you have mentioned though.
I can completely understand the apprehension around anesthesia! Many many people get worried, but you can explain your family history to the anesthesiologists and they will make sure nothing happens. Mine asked me about family history and my own personal history of surgery. It is absolutely normal to feel this way, but please don't let it put you off getting the surgery.
I agree with Lindle, you could do with speaking to a proper professional because a general gynae could miss things. I got a referal to a NHS BSGE centre through my GP, but that was only because my pain was so severe and i had a previous general gynae who didn't help me. If you go on the endometriosis.org website then you can find a BSGE list that you can search to see if there is one near you.
I also don't want to scare you, but equally I don't want you to be filled with too much hope that surgery will fix things. The part where you said you're glad this can all be sorted out...has your gynae made you aware that endo can grow back and adhesions can recur frequently? This isn't a hard and fast rule, around 2 in 5 women will have endo come back within 5 years of surgery. Especially if you have to maintain your fertility so this could end up being a long road for you darling. It has been for lots of us :(. Again I don't want to freak you out! But endometriosis has no cure, it is a life long chronic condition. Surgery and other treatments can be effective, but they are not a cure. Xxx
Thankyou for all the information, I will definitely check out the website. I do understand that it is reoocuring I am glad there are treatments I suffer from chronic pain anyway so I understand that it's only treatable. I would go through my gp to get referred to one of these centres but I'm sure as many people have experienced mine do not believe in my pain especially because I am young. Do you know if you can self refer?
Sadly no you can't self refer, not unless you are willing (or able) to pay to go private. I did this and it helped me get to see the consultant before being referred on his NHS list. I had a very bad experience with a general gynae who basically fobbed me off, and I was having severe symptoms which were leaving me pretty much bed ridden. So those two things combined helped me push for a second opinion with a hospital of my choice (within my region still, so for me any hospital in West Yorkshire). I had also been misdiagnosed with other conditions previously, so I think that also helped. I paid £170 for a private appointment with the specialist gynae, he is BSGE registered and so is the NHS hospital he works at. He said he would happily write to my GP to request that I am referred to his NHS practice. So then when I went back to my GP I had the backing of the consultant when I requested the referral! This was a massive advantage too, because they couldn't say no really when the consultant himself asked me to be sent there.
Good I'm glad you know love, I really didn't want to freak you out! I was so devastated when I found out it can just reoccur, I was baffled and felt so angry that we have to go through such extreme treatment yet have very little conclusive relief. It is very unfair! Sending lots of love xxx
That would be totally your call love. 3-6 months is quite good considering how bad the NHS wait times are atm, I waited over a year. It would depend on how fast you want to be seen really! I would imagine that a specialist would have quite a long list, so you would have the wait to be referred, then the wait for the first appointment, then the wait for the pre op appointment, then the waiting list which could be up to a year even as an urgent patient. I would imagine it could add another year or 18 months to your current wait xxx
Hello, sorry to hear you're having such a rough time! I'm a similar age to you (22) and waiting for my own laparoscopy so I totally understand how you feel. If you ever need someone to chat to or rant to you can pm me if you like
Whatever age you are surgery can be pretty daunting but actually you’ve done the hard bit which is acknowledging it and reaching out. Hereon it’s a matter of extra TLC and being really kind to yourself. In the meantime re the pain Tens machines can be really helpful and as it’s not medication you can use whenever you need it. It builds up with use over the hours so you can change its level once it gets at the pain reducing point to sustain it or ease it back.
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so this could end up being a long road for you darling. It has been for lots of us :(. Again I don't want to freak you out! But endometriosis has no cure, it is a life long chronic condition. Surgery and other treatments can be effective, but they are not a cure. Xxx
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