Looking for some support, advice, words from those of you that understand ...

[Princess90]

Hi, I'm new to the group so apologies if this seems a silly message.

I am 24 years old and have had the symptoms of endometriosis from the age of 14. Heavy bleeding, severe pelvic pain, back pain, irregular bleeding, the worst being 8 months without a days break, pain during sex, hormone issues, struggles with contraception etc.

At the age of 17 I was referred to the hospital and they found I had a lot of ovarian cysts, at this time it was left as a we'll see how things go and now 7 years later I have finally been referred to a specialist.

I again have some reasonable sized ovarian cysts and adhesions that show my ovary is stuck to the lining of my womb, the doctors now believe I have endo. I am due to have a laparoscopy on 27th July, pre op test on 16th July. I have managed to get private medical insurance and as such have managed to get the appointment much sooner than on the NHS.

I'm unsure what to expect for the surgery, post surgery and what will happen next?

I know there's a possibility this could be severe endo and I may have to have an ovary removed.

I'm only 24, I have no children and haven't considered having a child at the moment. But, now I know I may struggle to do this it has made me very reflective or my life, what I want etc. I'm also finding when I'm on my own I can get very upset and emotional.

I'm not entirely sure what I'm looking for with this post. I guess it's just the opportunity of engaging with someone that might understand or be able to give me a bit more information if they have been in this position or been through the procedure them self.

Thank you xxx

[JeanOsborne]

Hi , have just had my laparoscopy on Friday in which they drained a large ovarian cyst , but they couldn't do anything else as the endo is so severe it has collapse my womb . I now need a hysterectomy. I'm 42 and was tying for a baby. Don't worry about the surgery you'll be fine it's not as bad after as you might think. Just don't give up if the ondo isn't too bad they should be able to do something.

[Princess90 in reply to JeanOsborne]

Thank you so much for replying, I was worried no one would

I'm so sorry to hear of your situation, it's terribly sad. I can only imagine how it must feel.

I'm finding myself getting teary at the thought of a bad outcome, so can't imagine how I'll be once I have some form of diagnosis like yourself.

Thank you for your words in respect of the surgery it's comforting to know it's not that bad from someone who has gone though it.

I understand from some of the post there are stages of endo, but I don't know which is worse etc. I'm assuming you have suffered from a more severe case?

xx

[JeanOsborne in reply to Princess90]

I don't fully understand it myself , but from what my surgeon said stages 1& 2 they can treat but I'm stage 4 and there is nothing they can do. He did say they could try further surgery but didn't think it would make any difference and I would still end needing a hysterectomy.

Try not to worry ( I know it's easier said than done) just get the laparoscopy done and take from there. Just know you're not alone

[Princess90 in reply to JeanOsborne]

Thank you, your kind words to me mean a lot. Especially when you are having such a tough time yourself.

I wish you all the best in your future procedures and whilst it may not help right now remember there are other options when it comes to having children, adoption, fostering etc. I understand this isn't the same as carrying your own child, however being a parent is so much more than that and if you have love you wish to give to a child you will find a way

If you ever wish to talk further, you can always end me a private message

Xx

[MadMaud]

Hi Princess90,

I had several laparoscopies, and although uncomfortable and tender, they were manageable. I did get incredibly bloated and had shoulder pain. This is often due to the fact that you are pumped with air to help separate your organs and make room for the surgeons to get a better look at what they are doing. Sometimes the air gets trapped and somehow gets above your diaphragm, hence the shoulder pain. If you experience this, try and get a gentle massage around the area from a willing helper or professional. Mint tea and ginger tea may help too.

My laparoscopies didn't have a long term effect and some no effect, but this isn't the case for everybody. Depending on where it is and how bad it is affects the outcome. I was dismissed by my gynae and told I would be given no more operations, so I had no option but to seek alternative therapy, naturopathy and nutritional advice. In my case it was the best thing that could have possibly happened. I would urge everybody with any disease to do this.

When I was eventually diagnosed, it was on my Pouch of Douglas and bladder, my bowel was stuck and my womb had 'collapsed' (stuck to something else and pulled out of place) plus all the other lovely raft of symptoms that come with endo, plus told I would never be able to conceive. So I arrived at a natropath's clinic in a pretty messed up state. Endometriosis is an auto-immune disease, there are deficiencies and over-compensations going on in your body that YOU CAN do something about that doesn't require pumping yourself full of drugs. You definitely sound like a person who is willing to educate herself and look into all aspects of treatment. Yes, have the laparoscopy, it may well help, but please also look into the diet/nutritional side of your treatment. You may get a specialist who values nutrition, but you may get one who doesn't. There is fantastic info on this site, Lindle is amazing and there is access to a 6 part seminar on YouTube by Dian Mills which is great. There are Endo-specific cook books, the recipes are awesome. You may have to hunt around for a natropath who you 'gel' with, but it is worth it.

I have been drug-free and op-free for 20 years. My friend went down this route and now has a very healthy and loud baby boy! There was already too much damage done for me to conceive so that is why I am telling you to look into natropathy and nutrition now. It is no harder than going down the drug-filled route, but you have to be strict with yourself at first, and you will see results if you stick with it. Don't do it for a month and give in, it takes at least three months to feel real differences. Endo loves eostrogen and foods that promote eostrogen formation, eg sugar, soy etc. The liver gets rid of excess eostrogen but is over toxified by the western diet, bread, yeast, processed foods etc. I could go on and on!

I hope I've not bored you to tears! Endometriosis is so debilitating and so many women get mis-information or lack of proper understanding from GPs and specialists and just get prescribed a plethora of various drugs which end up making other symptoms of their own. Many women end up in an awful drug cycle. For some, it works, but when you read the posts on this site, you see for many, it doesn't.

I wish you well with your lap. I'm sure you will be fine. Look after yourself afterwards, no straining or lifting. Pamper yourself with a magnesium bath and take the time to educate yourself. Deliciously Ella, Honestly Healthy and Raw and Simple are fab recipe books to tempt the taste buds. A bit of yoga does wonders too.

Feel free to ask me anything.

Wishing you health, hope and happiness.

Maud x