recently diagnosed, please help

Hi everyone,

I have just joined this group and looking for a little help and advice really.

About 5 years ago I had an ovarian cyst removed from my left ovary, this had been a problem for over a year, rupturing on a monthly basis, which would leave me bedridden for days afterwards. Since my first laparoscopy the pains never completely went away, for the last year or so they have worsened until I had my second laparoscopy on 27th Jan this year.

After my second lap I was told that my left ovary had adhesions of scar tissue which means it was stuck to my pelvis, they cut some of the adhesions but were unable to remove them all without removing the ovary as they are so severe. They also said my left ovary is very small and pale in comparison to my right which likely means it is not working, nothing has been done to my right but there is no test to see if it is damaged. I was also told my womb was full of blood as I had recently had a period and that this was due to endometriosis.

Since the op I am still experiencing pain on a daily basis. I am currently taking the Dianette contraceptive pill and am having my first period since the op, this has been even more painful than usual but I am not bleeding, I have had a few stringy brown clots but am not even needing to use a pad or tampon, this has been for three days now, I am normally quite heavy. i have also been getting more and more pain in my right ovary which is supposedly the healthy one.

After my op I was discharged from gynaecology as in their opinion the operation was a success and I need no further treatment. I am 28 years old and have no children, and am terrified that now I never will. I am concerned that my womb is now just filling with blood again and frightened as to why my right side is now more painful that my left, which is the side I have had all the issues with.

I am planning to visit my GP but have been unable to get an appointment so will now have to wait over the weekend and am worrying myself sick. I would greatly appreciate any advice or information anyone can give me and would like to hear the experiences everyone else has had.

Thanks for taking the time to read this.


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18 Replies

  • My advice would be to get a refferal to a bsge centre, and be seen by a specialist, not a general gyne, I. Wish you luck

  • Hi Kat, from what you have said I don't think you endo has been dealt with properly. Please have a look on the BSGE website and find a specialist near you. Then go back to GP with this information and ask for a referral to them. In the meantime if the pain gets to bad go to a&e. Good luck.

  • Thank you for your advice, I have never even heard of the BSGE. Can you be referred on the NHS?

  • Hi yes these are nhs endo specialist centres.

  • Hi,

    I agree with the other comments. See a specialist and don't get fobbed off. I am 34 and my cyst on the left ovary not only keeps returning but I have another one there now and one on the right. I had to push for the scan as I knew there was something wrong. I had a lap to remove them 18 months ago but three have come back. I would say get a referral to a specialist but do it now, don't wait.

    Cysts and endo can effect the environment of the uterus, which can effect fertility. They can also effect eligibility for IVF. They're also really blooming painful! If you want children it may be worth asking them to look at freezing eggs, although that again will take a specialist referral. Ask you GP. Sorry if that all sounds serious and long term, I'm just being hit now with the fact that I waited too long listening to General gynaecologists.

    All the best x

  • Thank you for your reply, it's nice to have some actual advice. I have felt really alone like no one understands, all I get is people telling me I will be ok vos I still have one ovary, I know they're trying to make me feel better but when you know that's not the case it's no help.

    I have changed my GP recently after the lap as they did not take me seriously,nit took two years to be referred for my first lap and me demanding to be referred because I was too young to have anything wrong (23!) which has lead to my left ovary dying and then the second time was the same, I was told I had no gone problems and even had the doctor say 'urgh' while examining me because of the stringy brown clots I had.

    The surgeon that did my second lap said I would just be referred to pain management if pain continued, so I have felt very helpless.

    I will go to doctors on Monday and ask to be referred to a specialist, hopefully my new one will be more helpful.

    Thank you x

  • I hope this new GP listens to you, my initial referral was quick as he thought it was cancel (doesn't understand endo) but to the wrong place. Keep pushing, as hard as that may be. Unfortunately all the responsibility lies with us to know our bodies, know the condition, know the specialists, know the best treatment etc but it shouldn't be like that.

    I hope you get to see a specialist and get the support you need. Applebird always gives good advice (below) and there are many others here with similar issues. I get a lot of comfort from this forum and you're never alone. Send me a message anytime you need x

  • Thank you x

  • Hey there, sorry to hear you're having such a rough time of it. I agree with the other ladies that your Endo hasn't been dealt with appropriately and you need more support - Endo centre has a pain clinic, specialist nurses etc. so much more than the consultant.

    Here is the list of accredited centres

    Speak to your gp and explain what you're going through and that you feel you need to see a specialist for better treatment - excision surgery is the gold standard, laser won't do a thorough job.

    In the meantime read and learn as much as you can. The Endo resolved website is very good for information and I've tried many of the alternative therapies - you have to hit the disease from every angle you can. Change diet/lifestyle, have surgery, good pain relief, take care of your mental health by making sure you take time to relax. It will take you time to understand what works to help your Endo and to try different approaches.

    As for the fertility aspect Endo doesn't necessarily mean trouble and doctors make very sweeping statements, in reality it's taken on a case by case basis. As your ovaries seem to have been quite badly affected I would make fertility one of your priorities. If you are in a stable relationship you need to have 'the talk' as trying sooner than later is preferable, the Ivf process can take up to one - two years from referral, with pre existing severe endo you'd usually be referred after 6-8 months of trying with no success, whereas in regular cases it's after 18months of trying.

    If you haven't met mr right - don't panic! The best thing you can do is then have more efficient surgery and perhaps think about taking a hormone injection such as prostap to conserve your fertility or at the very least take the pill. There will be lots of options in terms of treatment and you can even have your eggs frozen though this is usually self funded and costly - perhaps book an appointment with a fertility specialist privately (circa £150) and chat to them about what is possible/best ways to conserve fertility if you're feeling really anxious and need reassurance.

    Wishing you lots of luck with everything and hope you feel better x

  • Thank you for your reply, it's so helpful. I have looked at the list of centres and there is one close to me which is a bit of a relief. I will try and get an appointment with GP on Monday and ask To be referred there. I have recently changed surgeries so hopefully they will be more helpful than my last, who I had to fight so hard to even be referred to gynaecology.

    I really appreciate you taking the time to reply.

    Thank you x

  • Also you mentioned alternative therapies and dietary/lifestyle changes. What kind of things would you recommend? Thanks x

  • In particular I'd highly recommend the Endo diet (read around this website it is great)

    It's a bit tough cutting out some things but you get there - main things to do away with = caffeine, alcohol, sat fat (tv dinners, crisps, all the kind of food you get in chain restaurants), chocolate, white bread/pasta - basically kiss goodbye to Italian! Completely cut out dairy and red meat - contains animal oestrogens - anything that raises your oestrogen level is bad.

    Speaking of which fat cells release oestrogen so if you are even the teeniest bit overweight it could be contributing to your Endo. Lose any weight you can, Endo ladies can find exercise is painful so try gentle walking, yoga or swimming, mainly though the weight watchers app helped me - most of their 'low points' foods tied in with Endo diet so was really useful!

    Acupuncture was fantastic for me and got a lot out of aromatherapy and massage to help with pain. If you have bowel Endo peppermint tea will help with it and calm down the pain - worked better than buscopan and painkillers for me!

    Main thing is keep relaxed, keep focused, don't let Endo consume your life. There will be a combination of things which will work for you to make you more comfortable. It will not cure the Endo but can make a big difference alongside having appropriate medical treatment - surgery or otherwise.

    Hope that helps xx

  • Thank you, that is really helpful. I am already vegetarian (18 years) so that's good news that I should be avoiding meat. I started having trouble with dairy a year or so ago and so cut out normal milk and cheese in the large part, so it's interesting to think this could be due to my endometriosis rather than an intolerance like I first thought. I will cut it out completely and see if this makes any difference.

    Thank you so much for writing to me, it's lovely that you've taken the time to help me and makes me feel like I'm not completely alone in this xx

  • Nps at all, we've all been there so know how you feel. Sounds like you are well on your way to having the Endo diet sussed! Keep pushing on with referrals and doing what's right for you. People always on the forum anytime you have questions or just need someone who understands xx

  • Poor thing, Kat! Dear, I'm so so sorry for what you're facing!

    Let’s go over a few things about your ovaries. Y know, inside them there are tiny cysts, called follicles, where your eggs live.

    By the time we reach puberty, we have about 300,000 follicles with eggs inside them left. From this gigantic pool of eggs, a follicle (or sometimes follicles) are be selected each menstrual cycle.

    Now let's think logically. Even if there is only one ovary left, another one is still full of strength and working properly. This means you still have a plenty of follicles ;) It's very good news!! From the other hand the doubled stress is laid upon your right ovary now, so with time it won't work as well as it does now :( This is bad news..

    Ovulation means the egg is released from the follicle in the ovary. Once you ovulate, the egg goes into the fallopian tube where it can be fertilized by a sperm. If fertilization does not occur, the uterine lining will break down and come out in the form of menstrual bleeding 14 days after ovulation. We can still call this brown charge menstruation i suppose, but this may be different because of your previous complicated treatment.

    Any way this is the perfect idea to talk to your GYN about everything. Discuss with him also your plans for future pregnancy for you not to waste time and act immediately. Time never plays on our side in this journey..

    I wish you all the luck in the world and just know you'll do it. Hugs, dear Xxx

  • Thank you xxx

  • Hi Kat, it sounds like you've had some very bad luck in terms of doctors, one of the saddest things you've mentioned is that you have to fight them to listen when you're feeling so poorly. This isn't right. The specific BSGE centres will be much more understanding because they understand the disease and the vast effect it has on women's lives, you won't have to fight as much with them.

    In terms of managing pain through diet I found the Dian Shepperson Mills book very good, it's got a diet to do with recipes and menus but it's also a nutrition guide, so you can make sure you have the right vitamin levels (endo affects your immune system) and support from other women.

    I have been wheat free for 12 years now, and although difficult at first, it has made such a difference and has got easier over the years with so many more options on menus and got better at cooking my own wf stuff. Highly recommend this- or cutting down at least if you can handle the full quitting just now.

    Baths, heat, gentle yoga and stretching when you can also help. Ginger is good for inflammation so if you can squeeze that in your diet that's good.

    You can have a fertility test FSH Ovarian Reserve Test privately (approx £100) to see your levels, although this isn't a guarantee of fertility it might be reassuring in terms of knowing the effect the surgery/ endometriosis has had on your egg reserve.

    Hang on in there, the drs have made you feel lonely and helpless but there are lots of options and better people to help you. And we're all here and sharing together! Once you get pain in control you'll feel so much stronger xx

  • Worry complicates healing. I pray they find a solution for you soon. Heating pads, a warm cuddly spot, and a good movie usually helps me keep my mind occupied. Gentle ((hugs))

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