confused and scared

Hi all,

I don't really know where to start...I'm almost 31, and a new diagnosis. I'm due to go in for my pre-op on Tuesday in preparation for a Bilateral Laparoscopic Ovarian/Adnexal Cystectomy, they plan to slice off the top of both cysts that encase both ovaries and fallopian tubes, I also have to have a MRI scan on Tuesday. They've not given me a classification of stage yet, just that I am at least stage 2 and I have nodules on my bowels, the Registrar I saw was lovely, just not very helpful and neither is my Doctor. I have multiple 'symptoms' that she doesn't want to address, the last time I was there she said I was too complex and she didn't want to treat me but I really need some pain killers for my back, legs, and head. I suffer depression and anxiety which she has recently started to treat me for but the registrar said I need a much bigger dose to deal with my problems, I get cluster headaches when I get my period and migraines throughout the month, I've started to get Sciatica and I have constant pelvic and back pain. This is just the tip of the iceberg! I need to go and see my Doctor this week for more meds but I think it's going to be the same story again and she's just going to dismiss me. I've been trying to tell her I have insomnia but she just isn't interested and I don't know what my next move should be with her. I'm scared I don't want the operation but they told me it was really my only choice given the situation with all the cysts I have and my fertility being an issue. Everything is moving so quickly and I'm struggling to come to terms with it...I've been looking for other options but they've all been dismissed! I am surrounded by family and yet I feel so alone, I need some advice and I don't know where else to go! I feel sick constantly and I can't stop crying I'm just devastated things are this bad, I don't have children (yet...I hope) I just want to be a normal, happy, mummy but that dream feels like it's dying in front of my eyes.

Kelly xx

6 Replies

  • Hi - this seems to have been forced on you without any real solution being offered and there is no wonder you are confused and worried. Nodular endo on the bowel should only be dealt with by a skilled specialist in an endo centre. Is this consultant such a specialist or are you being seen in general gynaecology? What area of the UK are you in?

  • I'm in Liverpool, I'm being treated at the Liverpool Women's, it's only been 6 months since I had a miscarriage and found out I even had any cysts etc, my first real conformation was when I saw the Registrar last Thursday, before then it was all well maybe we're not sure yet, and at the same appointment he talked me down and I signed the consent form for the operation. My partner and I had decided we didn't want to agree to the operation until we'd fully explored all the options. I'd done my research, I went in with a full list of questions and alternative treatment options but he just said no to everything. I'm just not sure what my next move should be, I want to be a mother, that's my main aim but I'm just not sure about anything else.

  • Kelly, I'm so sorry you are going through so much and completely empathise with how shocked you can be in the early stages. I know the surgery can be so frightening. If you have advanced disease, especially if there are nodules on the bowel, excising it is definitely the best option for your long term management and it will also get you into good shape to try to conceive!! I know this aspect can be particularly painful emotionally, try to focus on the surgery right now and getting your body into a good place. Endo doesn't mean fertility probs always. I had a miscarriage recently too and am not necessarily attributing it to endo, it's very common for 'normal' women to have miscarriages too. I've found the miscarriage advice associaction very helpful. Even if there is a problem there is a lot that can be done, with a good success rate particularly if you're under 35! Trust that you are doing the best for you and any potential offspring right now, the surgery will tidy things up and give you a better chance.

    If your gp isn't addressing your needs see a different gp. You are more than entitled to pain mens if you need them and sleeping tabs as a short term solution. As for the antidepressants it's best to titrate the dose up slowly and see how you go with it. Cyclizine I find is very good for nausea.

    Bear in mind you'd need to come off all of the above when you try to conceive so build up your doses and meds slowly to see how you do and what you can cope with.

    Currently I am having massage (through a charity) and acupuncture to help with pain and sleep issues and am finding it very successful. Next I am starting gentle swimming and maybe yoga.

    I've also found the endo diet has helped me - you can find details of this on the endo resolved website. You can also look for a local support group on the endo UK website, I think meeting with women going through the same as you for support would be a great move.

    I know right now everything must be so overwhelming and you are in so much pain, shock and distress. You will find your way through this and there are a lot of ways that you can take back control and manage things. I'd agree with the advice that a specialist surgeon is best so make sure that you've got one and also if there is an endo clinic near you ask your gp to be referred there for more support and better care.

    Wishing you all the best of luck, take it step by step x

  • Thank you for taking the time to reply I really do appreciate it.

    I'm going to see my doctor today, again. If she still refuses to help me I'm not sure what my next step will be, probably come home and scoure the internet for a GP with even just a basic understanding of the disease. I feel isolated from the people who are meant to be helping me (doctors etc) my GP is only 24 and she's a bit standoffish with me I'm not sure if that's my fault or her bedside manner. She's not confident treating me she's the 2nd Dr at the surgery 'to have a go' the first was a man I really liked and felt comfortable with but he's retiring and she's taking over all of his patients.

  • How did you get on with the gp? I've found with the younger ones they're more likely to refer quickly as they're new to the game and less concerned with practice budgets etc. The girl's behaviour does seem a bit odd... I've seen at least 6 different docs in my practice, it can be a case of trial and error until you find someone who actually takes you seriously. X

  • Still no luck for pain relief, I'm back again tomorrow for my smear, I've asked for an internal referral to a different practice (it's a health centre with 4 practices and 9 Dr's in total) I've got to wait and see if any of them will accept me.

    I asked directly if I had been a 'bad' patient and she said oh of course not, my last words to her were how I felt let down and how she failed to build trust between us so I'm hoping it's given her something to think about. I tried to keep calm and I think I achieved it.

You may also like...